Hard Days

Starting a post is hard when I have not written for a bit. I feel like saying I'm sorry for not writing more often, but the past week or so have been a blur for me in many ways. I have been dealing with more pain and more panic attacks. Just when it seemed that things were getting better, I would experience something else. A thought or a conversation that would trigger an attack and my inability to breathe.

After that original attack on Friday, things seemed more stable, though the presence of small attacks were there all day. Throughout the week things got much better, and then finally something set off another pain attack and another panic attack would set me back all those days I moved forward. These days have really worn on me. I can't say that going through this has been expected in any way by either my family or by myself. Along with the on and off bleeding, we have been in real disbelief with which how much we have had to cope. The last time I had severe bleeding was 2 nights ago, and it was much more than usual. This time my haemoglobin was effected the doctor said, and the effort of coughing up the blood was really hard on me. I was choking on the blood and had to leave my Bi-Pap in between the cough ups, to help me get through it all. By the time I had cleared all the blood, I was so tired that they gave me something for the terrible pain I had. I slept for most of the day.

Due to the blood I was unable to get my Tobra and Pulmazyme as they are irritants and would likely make me bleed from my lungs again. This was really hard for me to do. Those drugs allow me to breathe somewhat! When the blood totally stopped on Wednesday, my friend Melissa was helping out that night by staying the night at the hospital with me. She's amazing, Taking the time out of her life and spending midnight to 6am by my side. The doctors really want this as I am often sedated and need more help. Anyhow, Melissa arrived with her boyfriend (he just wanted to pop in and say hi to me), and at that moment, for no reason I began to once again cough up tons of blood. Her poor boyfriend, who's never been around CF before got quite the show!! But he hugged me and was amazing. He's a good friend of ours. That was Wednesday, with a few hurdles that night. Thursday, no blood, lots of pain killers due to lots of pain. Friday, more blood, controlled pain through long acting and short acting pain killers. Ups and downs. Finally I had had enough and took an Activan to sleep. I needed a break! So I slept 16 hours.

Friday evening before everyone went home, my doctor stopped by my room before she went home to speak to me. She was visibly upset when she spoke to me. I was sleeping when she came in. Martin was with me, I was on my Bi-Pap. I opened my eyes. She told me that it was going to get better, that we were just going to have to get past this. Whatever this was. These attacks were just panic attacks, and were not a reflection of what my body was doing right now. The fact was I had just gained weight due to the Lipids. My white count was down, and the bleeding seems to be over with. Panic attacks are common in this situation she said, so close being able to breathe, but not being able to. But we will get through it together she said and I believe her. I do. As she walked out the door she turned filled with emotion said "I will not let anything happen to you" Dr. S is another one of my favourite people here.

Since I have been very immobile to do anything in my condition, I have been able to do a lot of exercises in bed as well as a new physio therapy. I will ask what exactly it's called when I see my physiotherapist tomorrow. It focuses mostly on massage and relaxation to allow me to move as many secretions as possible. It has really been working, especially since E came in on her weekend on her days off. I really do have an amazing team that will do so much to help me get stronger and past these tough moments. I just adore E, she is unbelievable and has done so much for me during the past few weeks. When I have one of these attacks E is one of the people that can help me breathe.

The weekend was overall better than the week. Last night my mom stayed with me. It went pretty well. I am a lot stronger and feeling like perhaps this could be the end of the attacks. We certainy hope so. They have taken a toll in my treatments and even in my overall CF care. This is why I really want to move forward from this. It has been just so hard on us. The stress has been too much. We are now hoping that things stay more stable, and of course that this call comes.

Below is a really really cute Scarlett video! I thought it would put a smile on your face....since it really put a smile on my face!!

Panic Attacks.

When no one can explain a medical behaviour, or pattern of occurrences. It's a panic attack.

I am not against the diagnosis, not at all. After all I have something to panic about. But I am not so certain that's what we're dealing with here. Time will tell. I am using some new medication and trying to see if things get better at all.

Last night things got really bad. My dad was here with me, after Martin went home to bathe Scarlett, and saw me progressively get more and more unstable. What started off as a low grade fever, ended up as increased heart rate, respiratory rate (which is already high at rest) and blood pressure (which I never have a problem with). I felt like I was going to explode. My chest was so tight, I could not breathe and taking a deep breath was incredibly painful, and as time went on impossible. At the height of it, I was suffocating, choking, and feeling like I was dying. Terror.

This time they did an ECG. Last time it was due to my being up for too long and getting desaturated. This time there was no such moment. It just started to build up in me: The breathlessness, the tightness, the fever and the burning in my lungs. The ECG showed nothing. I knew it would show nothing. (my heart is perfect thank you) The doctor on call was not exactly someone that I knew would come to any conclusion. It was late at night, and after a conversation about what he would get me for the pain (more Percs) and to help me relax (Ativan) he actually asked me the question that I get with dread (do you know when your transplant will be?) ......what? you're a doctor?! How can I possibly know when it will be? When I get that question from friends or family, I think they just don't know, they have not thought about transplant. But from a doctor? It's scary. I smile, and say, well it's not from a living donor.....they smile and GET IT. I think. I hope. I guess my doctors have to sleep sometime. But I wish they didn't.


Anyhow, so right now we're waiting to see when is the next time this panic will unfold again. We are trying to stay ahead of the pain, which in my opinion lead to my panic. And if that's not enough, that mild sedative. Personally I would not mind being 'mildly sedated' more often than not in this situation. It's hard. And sleep is the only thing that really makes me happy. Restful, glorious sleep with my Bi-Pap. Anything else leaves me out of breath, choking. Something gasping. Right now I am on a tiny tiny little sliver of Ativan that I let dissolve under my tongue. Not even 1mg. half that. I want to see if it helps with that tightness inside my rib cage. All it really does, is make me really sleepy like everything else. I just want to reduce those episodes, they terrify me. I try everything to calm them away, but nothing works.


My dad and I talked about it last night, after I was back to myself. I told him that I have definitely noticed that since January, I have been more and more insecure to sleep without light or the tv (and this is SO not me), that I liked sleeping with noise and people around, even being up at night and sleep in the day. Nights at home, when everyone was asleep and I was so scared of falling asleep since it was becoming so hard for me. Again this is before Bi-pap. I had just developed habits that were curious, and a reflection of how anxious I have become. Recently I have to say, when I close my eyes I think about only a few things. I think about getting through the operation. I think about Martin and Scarlett's life if I don't make it to getting my lungs. And I don't get sad, I get panicked! Is it possible that Scarlett will never know me? What a crazy thought to even think, but I know, it's all about the toss of a coin. Timing. And things can go one way or the other. and we can believe and pray and hope, but anything can happen. I certainly have known people that were loved and cared for my communities of people, and though it seemed unthinkable, they did not get their miracle in time. Unthinkable. Unless I am very very tired, I think about these things, and I wish I would not. They are not helping me. But I think that's the nature of anxiety. When you fall into that cycle. Anyhow, next week when my doctors are back in rounds, I will have a conversation with them about seriously helping me get through this wait with less panic, and more calm. Since I want to be calm. I am calm. But something deep inside me is evidently having a rough time. No shame in it.

For your viewing pleasure, my baby at 3 months.

Happy 3 months baby cakes!! Mommy will get those lungs soon and be home in no time!! xoxo