Friday, April 22, 2011

Submit to What You Can't Control

Julie has been dealing with a lot of nuisances this week. With her blood sugars everywhere, nausea, vomiting, bloating, sinus pressure from her CF and a sore incision, this week has been a bit rocky. The other night she was weeping because of the pain it was causing. She doesn't cry very often so I knew she was in excruciating pain. She couldn't even keep her pain pill down so she had to just tough it out. Finally after a few minutes of watching her suffer without any power to do anything, I asked her if she would like a Priesthood blessing. She accepted. I don't remember particularly what was said, but once I was done, we tried a few new approaches with a heating pad my mom gave me, and a Lortab. For the cynic out there, a priesthood blessing at the very least gives you clarity of mind. It is a time to meditate on what is going on for the giver and the receiver. From our perspective, it is what was needed for us to have the inspiration of what to do. She was so bloated she said 'I feel like I'm going to explode out my incision'.

It is difficult to watch anyone suffer, especially those you love. Many times we can do nothing but call on a higher power for help. This is very consoling, and can bring peace, even for the non-believer. When we submit to what we can't control, it seems as though things play themselves out and improve. I can compare the feeling I had the other night to how I feel when my child is sick and inconsolable. You feel helpless, frustrated, tired; and then you think about how they are feeling, and what you are feeling doesn't even matter. I couldn't do anything the other night but watch and assist. It was tough, but then again, not that bad for me. She had a hell of a night; she is the one who was cut in half just over 6 weeks ago. She is the one who had her diaphragm pushing up on her incision without any pain med or even Tylenol in her body. She is the one who couldn't vomit or go to the bathroom to relieve the pressure. Gas ex, miralax, milk of magnesia and other remedies didn't even touch it. But after a blessing with the power of the priesthood and more importantly her faith it would help, Julies mind became clear, and she knew exactly what to do. I don't know what we would do without this power of prayer, priesthood and her faith. It has made very intense situations, not only bearable, but low stress. When there is a problem, we have been able to assess what is going on and act. It is a real power that cannot be denied.

This picture was taken at 4:48am last Saturday morning after feeling bloated through the night. This wasn't the night I just described. However despite feeling crummy, and not sleeping she took this picture of her nails and sent them to her Mom. "Look at how pink my nails are."

We have had a lot of positives in the past week. Julie is a bit of a star up at the hospital. Her nurse told her she heard how she was showing off in rehab by running. Julie said 'I'm not showing off, I just want to get better.' Her determination to be compliant is truly what is causing her to thrive. At times I hear the nurses talking to Julie saying things like 'we are so proud of you' or 'you are doing fantastic'. Her doctors on more than one occasion have told her that her recovery is remarkable. Despite her nausea this week, her nurse said, 'How many weeks out are you?' "Six" Julie replied. 'Unbelievable.'

Our nanny took Thursday off so Julie had her first few days alone. I arranged for my mom to come over when the boys woke up. She told me she would call her. To my surprise on my way home yesterday she called and was there alone with the boys in the background; My mom wasn't there. 'Was I supposed to call her?' "Yes! I don't want you lifting those kids." When I got home I asked her how it was taking the kids by herself. "Awesome" she said. "I didn't have to have anyone here." I was a little taken back by her response. She felt empowered; to do mom things by herself. Our nanny called in sick today and she had the same attitude, however this time I made sure she didn't take the kids out of bed by herself. Her friend Heidi came over to help her.

Life is moving forward. We have struggles, but who doesn't? This has been a good week despite what Julie has gone through. She still has to be careful what she eats so as to not upset her stomach, but she just told me it feels like shes got a handle on it. Little by little life is not only back to normal, but better than it was.

Saturday, April 16, 2011

Downside up: Nebulizer discontinued

It's hard to believe that Julie doesn't have CF in her lungs . We were on a walk yesterday over to our friends and as we were walking up a hill by our house, Julie and I both were amazed at how effortless it was for her. Yesterday Kelly Julie's nurse called and discontinued the nebulizer treatments that she was doing four times per day. Each treatment would take about a half hour and she would have to plan her day/evenings around them. When I walk into our room now, I don't see machines, and tubing, and a basket full of neb cups on the side table. It is so surreal. We are just about at 6 weeks post op and my life has been turned downside up. We are already getting used to how things are right now. All that 'stuff' is becoming the exception, and not the norm.

I have learned a lot from this experience. I have learned that no matter how bad things get, they can always get better. Despite the looming possibility of bad news, even now, Julie has taught me to live today, and don't stress about tomorrow. It's been in a way that you wouldn't expect though. Julie is an analyzer and a thinker. There is a lot going on in her head that I don't even know about. It is not uncommon for her to ask me questions about what she is feeling or what side effects she is experiencing. She will often state the worst possibility. I will counter that with what I think is going to happen, or what I think the side effect is from and try to lift her up with some hope. Over the years I have found that she typically already knows or believes what I tell her, but she asks me so that she can verify it in her own mind. By staying positive (partly to keep from going insane) and countering her sometimes worried question, I have come to believe it. Sometimes my response isn't what she wants to hear, but again I find it is typically what she believes already. We had to come to terms with a lot over the past 4 years. I feel like we would hash things out as they came and then in Julie's words would "Go for it". Coming to terms with having to have a transplant is a classic example. It was a real nail biter. When things gradually get worse, you adapt and deal with them. Our lives were turned upside down in November when we were told to consider this procedure. Julie had the world view that she wouldn't do this unless she was on her death bed. We had to come to terms and face the fact that despite her fight and will to live, she could easily get sick and rapidly decline. Waiting till then was as we learned was not an option. Going in and out of the hospital is actually something we got used to. It was always a goal to keep her out for as long as we could with out causing permanent damage. The window between hospital stays was narrowing, but there are great advancements around the corner with the treatment of CF so we continued to hope and fight. When this was brought to the table last year, our so called plan to get Julie better was interrupted.

This may all sound ungrateful, but I think this is what happens to a lot of us. As I have made goals and had hopes throughout my life, they seldom play out the way I want them to or think they will, but the outcome can still be there. I am overwhelmed with gratitude for this process as with the joy this outcome has brought my wife and I already. I believe it is important to have mental goals, but to be okay when things don't play out as we plan them. It is not always bad despite what is in front of us.

Tuesday, April 12, 2011

Free at last

Yesterday Julie sent me a text while working that said: "So my PFT's were 76% (FEV1)! Dr. Cahill said I look fabulous! She wants me to discontinue my antibiotics: Meropenem, Ciprofloxacin, Azithromycin, and Bactrim. I got labs today and I show negative on any infection. I jogged today [for the first time] and it felt good. My white blood count is a little low so they want me to discontinue the Imuran (anti-rejection) [for now]. I kind of have the shakes because of it. So I'm getting a blood draw again on Friday. So far so good. I'm discontinuing my Lasix pill as well (water pill). My weight is back to base line."

She was giddy when I called her after my lunch appointment. I could hear her giggling about not having the Meropenem. In case you don't remember, it was a 24 hour infusion that went into the port in her arm. Consequently the tubing would get caught all the time on the hardware in the kitchen while doing dishes or preparing food. She had to shower with it, go to the bathroom with it, ride in the car and slam the tubing in it etc. Naturally she called it her ball and chain. When I came home the first thing we did was de-access her port (pull it out after flushing it). She was a new woman! She is free from all tubes for the first time since she was around 20 years old! She was up for a walk and here is what we did:
video

Tuesday, April 5, 2011

Oxygen Gone!

It's been one month since I recieved the call for my lungs. Today Praxair/Apria came and picked up all of my oxygen:  two liquid oxygen tanks (R2D2), an oxygen consentrator, six E-Tanks (steel gumby), and two pressure gages. What a relief! I have more room in my closet and no sight of R2D2s and steel gumbys (our name for e tanks). I am so excited to finally have some normal space in my house instead of having it decorated with medical equipment. I can't believe it's gone. People would tell me it might be mentally hard to get used to being without oxygen, but if I don't need it, I don't need it and if I do need it I will order it. I am fine without it. I do have to admit after I had my first biopsy the drugs made my respiratory drive slow down so the PA advised me to nap with .5 Liters of O2. I was parinoid so I did exactly that. I got an E-tank out and napped and slept with it all that night. Previously being on a Bi-pap at night on 6-8 liters, an e tank wouldn't cut it, especially all night long. I really didn't need the oxygen the second night after my bronc, but my sweet husband had to tell me straight up, "you don't need it, you are saturating 96% while you are sleeping". I was just mentally comfortable with wearing my oxygen.  Now I can say the oxygen is gone and I'm ok with it. Another positive, last night I invited my husband back into our bed. That is a sign I am feeling good enough to sleep through the night and not have one eye open from the pain. I can sleep through his light snore again. Dave was probably relieved to finally come back to a nice comfortable bed instead of being on the couch for three weeks.

"Rolling with the punches": An exerpt from Julie's Journal

March 31, 2011

I received a double lung transplant on March 5, 2011.  It was successful and for that I am very grateful.  I am still recovering, but am doing great.  I can't complain, although there are bumps in the road I have to deal with.  For example:
1. In the hospital, I had a stomach ache so bad, Dave had to come up at like 2:00 in the morning to be with me. (Please excuse my sloppy handwriting, I just did an albuterol treatment).  This stomach ache was from the antibiotic Cipro (taking it without the anti nausea med Zofran).
2. Not being able to be with my babies, or hold them. Ben and Jack have had coughs and runny noses.  Walking around the house with a mask on and trying to stay away from them has been extra hard.  Thank goodness for our nanny Mary.  She has been our saving grace.  And my husband Dave; He has been wonderful with taking care of the boys and doing the grocery shopping.  He does so much for this family. 
3. When the pain pills wear off your body is trying to protect itself so I would get a purr like sound in my lower airways.  It felt like mucus was in there and it would create a little bit of a collapse.  Early on after the transplant, my x-ray showed I had a little collapse up by my right shoulder.  They had to do a couple bronchoscopies to clear out the big airway so the little airways would be able to open back up.  When you have a collapsed lung that sounds scary, but really they can fix it & there's nothing to worry about.
4. Prednisone makes me have all the side effects: water retention, moon face, protruding stomach, depression, mood swings, and high blood sugars.
5. First bronchoscopy with a biopsy at day 21: Lower airways are inflamed, no rejection, but treated like it.  Intravenous Solu-medrol was given Thursday, Friday, and Saturday for 50-60 minutes.  Its a steroid in the same family as Predisone and has the same side effects only this was about 50x my daily dose so they were amplified.
6. Bypass during surgery: This was unexpected but my CO2 levels were too high.  They had to cut the end of my sternum off and bypass my lungs for over 4 hours.
7. My knee hurt from "water on the knee" but after the Solu-medrol, the pain has left.

At the same time, things have gone extraordinarily well too:

1. The lungs were a perfect fit.
2. The surgery was a success.
3. My incision is healing up great.
4. I have had a fast recovery and was only intubated for 24 hours post op.
5. I had my first walk only a few hours after I was extubated.
6. I was in the hospital for only 9 days, and they could have discharged me in 8 days. (Sometimes things move slow up there)
7. My first PFT's on day 19 were 68%; I was most likely around 25% prior to surgery
8. My PFT's on day 21 were 71% and that was the "Best they've seen" (for a cystic fibrosis patient post op) said the Lead RT in the CF unit.
9. The bronchoscopy on day 21 showed pink lungs and Dr. Cahill said, "I'm bored."
10. During rehab I am able to advance and work up a sweat every time I go.  Before, I didn't have the lung function to even break a sweat.
11. The first time I went to rehab my O2 sats were at 99% when I got there.  I used to always desaturate when I would go down there.
12. I was discharged from the hospital without oxygen.