Hannah Linz's Journal
Hoping We Know What We're Dealing With
Written June 13, 2013 3:37pm
It's been more than a week and since I posted Hannah had continued to decline. I called the doctors last Saturday and again on Monday. The cultures came back on Monday and once again showed negative. So, no bacterial, fungal or viral infection. Frustrating! Of course, the question then is "what are we dealing with?"
The conclusion is Bronchiolitis obliterans organizing pneumonia (BOOP). It is a non-infectious pneumonia. It is major inflammation or swelling of the bronchioles and surrounding tissue in the lungs. The scans will show up like pneumonia and the practice is to begin treating it like an infectious pneumonia with antibiotics and initiate various cultures to nail down what you're dealing with. In Hannah's case she never improved with medication and all cultures and there were many, came back negative. It's a process of elimination to get to this diagnosis but in the meantime you're not getting any better.
The inflammation of the lungs is a side affect of the chemotherapy treatment and other drugs that she's taken. Chemo is hard on your body and organs like the lungs, heart, kidneys and liver.
As BOOP continues to progress, the inflammation reaches a point where eating is very difficult as well as a feeling that you will throw up what you've eaten. That was what was happening by Saturday through Monday. Hannah has lost a lot of weight. Not being able to breathe and function has been a very scary situation and another test of Hannah's ability to overcome. HOPE - that's what a person has to hang on to. Hope that we'll find an answer. Hope that the treatments will make her feel good again. And Hope that she'll soon be able to get on with her life and whatever the "new normal" will be for her. That's what got her through each day and to this point.
The treatment is a steroid regimen. She has seen a pulmonary specialist and has now had three days of treatment. If she doesn't see an improvement within a week, additional testing will need to be done. Hannah feels that she's beginning to experience some improvement as of today, so maybe they've gotten it diagnosed.
Appointments have been made at the Mayo and we'll be going there soon for a few days of testing to see where we're at with the cancer and the other side effects that have occurred because of the treatments. When dealing with cancer, you treat it which causes something else and then you treat that which might bring on another thing.
She's just looking to be normal; to be able to get up and do things and feel like it too. We've spoken to so many people and read the Caringbridge posts where people have shared that they are praying for her. We gladly except your help in asking for a cure and good health for Hannah.
Throughout this experience we've been touched by so many people. We've been on the receiving end of so many acts of kindness and have seen the goodness in people. Thank you! We appreciate it more than you know.
As we've experienced these past three years and watching our daughter face cancer, I want to tell people to: Enjoy good health and not take it for granted. Don't waste a day - do something with it and do something for someone else. Be kind to one another and cherish time with family and friends. Life is short. Live it and live it well. No regrets! All things you've already heard but it never hurts to be reminded.
Until the next post and hopefully it will carry good news.......Take care and God Bless!
It Just Isn't Very Easy
Written June 6, 2013 9:30pm
It's been awhile and a lot has happened. Some good. Some not so good.
After leaving Rochester Hannah spent less than a week recovering in Watkins, took a nursing makeup test through our local high school, began studying for the quizzes and another test to make up. By Monday, the 29th of April, she was back at NDSU attending her classes, took her 3 quizzes and a test and the following week had her finals and ended the semester.
She then started her nursing internship with the first week being orientation. And then she made it to Sioux Falls to be at her good friend's wedding just as she had planned. So far so good.
By Sunday after the wedding she was experiencing a pounding headache. By 10:00 am Monday before she was to return to Fargo, she called me at work and said she felt like her head was going to explode and she couldn't get her air. By 11:00 am we had Hannah in the St. Cloud ER and the testing began. With Hannah being treated with blood thinners for past clotting, CT scans were done to check for clots in her chest, bleeding on the brain, a chest xray, an EKG, blood tests and after all of that nothing was found. Six hours later I took her home. Hannah slept for a few hours, woke up and once again her head was pounding, she couldn't breathe. Eventually she threw up and had a fever. We called the Mayo and they said to take her back to the St. Cloud ER and have them call her.
So, by midnight we were back in the ER. After talking to the Mayo, a concern was potentially menengitis, so a spinal tap was done. After that Hannah was finally on IV pain meds, nausea meds and antibiotics. The test results came back clean. By 5:00 am she was admitted to the hospital. Neurology and infectious disease was brought in and more tests including MRIs and more blood work that was sent to the Mayo. By Thursday, she continued to have sporadic fevers and with the pain meds had the pounding headache improving. No bacteria or virus was identified. Hannah was released from the hospital after several days of IV antibiotics.
This was to have been Hannah's first week of working on the floor as a nurse intern and because of her time in Rochester she has 8 nursing class clinicals to make up at the hospital. She has had everything scheduled and planned and it was very disappointing for her to need to make calls to tell people she couldn't show up for work and couldn't come to the scheduled clinicals. After being released from the hospital on Thursday, she said she was going to go back to Fargo and get back on her nursing internship and clinicals schedule. She worked Saturday and Sunday and came home for the rest of Memorial weekend. Her breathing was worse and she would gasp for air after taking the stairs.
Last week I made a few calls to the Mayo and called the doctors in Fargo to share what Hannah had continued to experience. Her lung capacity and ability to breathe continued to decline and I shared with them that something was terribly wrong. An echo cardiogram was ordered up last Thursday to check her heart and then this past Monday she saw the oncologist. The doctor said her right lung sounded like she was breathing through a tube. Another CT scan was ordered. Hannah went to her makeup clinical at the hospital at 3:00 and by 4:00 was called and told that she needed to check into the hospital. She was very disappointed once again because she can't get things completed. The CT scan now shows that she has some type of an infection affecting her lungs
So Hannah has been in the Fargo hospital this past Monday through Wednesday. She went through what is called a brochioscopy where they sedated her and put a scope down into her lungs to get samples of the mucous that can be cultured to determine what we're dealing with. She once again had been on IV antibiotics and now has been released from the hospital on two new meds while we wait to hear what we're dealing with. Once we know what is going on the meds may need to be adjusted.
To give you an idea, she needs to walk slowly as she can't get her air. Eating is a challenge as we don't even realize how we need to breathe while we're eating. Right now it's work for her. She needs to sit after any amount of exertion.
What does she do after being released from the hospital yesterday? She calls her nursing internship manager and tells her she wants to work today. She worked a full day today and said she doesn't want to sit around being sick. She's enjoyed the work and it gives her a chance to do something normal. People have been awesome in working with her throughout the process. How many people would keep fighting to get back to work and would have given up by now and said, "I'm going to give it a break". Her will and drive is amazing.
We did find out that the infection isn't bacterial. We were told the cultures could take 7 to 14 days to run through completely. We're hoping to know what we're dealing with next week. Hannah will have follow up appointments.
We pray every day that this gets figured out and that she can begin to feel well and do life's basic things. It's very tough for her right now. When you can't get your air, you aren't able to function very well. She doesn't ask for much. She just wants to feel good again and get back to doing things.
We'll keep you posted and hopefully, we'll have a treatment plan soon that gets things turned around. Hannah's been a patient in three hospitals in the past six weeks and gone through so many tests and endured a lot of pain and discomfort. It's a lot to go through, and yet she keeps on fighting. We admire her spirit. She deserves a break, so let's hope we get some news.
Written April 23, 2013 7:57pm
We finished up the four appointments today and the catheter was successfully removed. So far, no bleeding from the site which was something we have to watch out for with her on the blood thinners. We filled the prescriptions and made plans for future appointments along with getting instructions for what she needs to watch out for during the first 100 days. This includes no vacuuming, cleaning of bathrooms, mowing lawn, swimming, sitting by a campfire to give you an idea. Lots of rules and guidelines for the next few months.
After our appointments, I loaded the remaining items into our vehicle and we hit the road. The long ride was a bit much for Hannah though and she was sick right after we arrived home. She's doing better now and was able to eat something after awhile. They told us today that the nausea can come and go for a month after transplant and that it does.
It's great to be home and it's one step closer to getting back on track. And yes, she did need to wear sunglasses on the trip home. We'll see many of you soon,