It has been a very stressful week for me and my family but I know we will get through this so here is a recap of all the excitement that has been going on.
Monday, was my CF appointment and it was also time for Maria to have her liver enzymes checked again. If you are new to my blog Maria has had elevated liver enzymes ever since the birth of Alayna and we still really do not have an answer why they are elevated. I knew going into my CF appointment I wasn’t feeling 100% like myself. I was battling a cold for close to a week this past Monday. I had a sore throat and was feeling congested. My appointment as far as the exam went well. The doctor told me that I sound uninteresting as usual in my lungs. That nothing was rattling around or anything like that. This usually is the case where I have nothing loose or rattling in my lungs. I told him how I was feeling lately and he wasn’t to concerned about me having a cold as he said colds can last up to 14 days. This coming Monday will mark my 14th day and I am feeling better every day.
Next, came my turn to battle the lovely pulmonary function test. I was really anxious about the test because I knew going in I wasn’t going to see numbers I am use to. But I kept that in the back of my mind because before I got this cold I was feeling great. To review my numbers from my last visit my FEV1 was 72 and my FEVC was 96. The higher the numbers are the better! So I sat in the booth and put the nose clips on and blew my lungs out. To my dismay, I knew as soon as I had the first test it wasn’t going to be a good PFT day. I asked the RT what the score was. He said, “FEV1 62 and an FEVC of 93”. He asked me, “Are you feeling sick?” Well yes I am. I have a cold! Ugh I hated seeing that number though. Even though I knew it was going to be down from last visit I didn’t expect to see that. I blew two more times and they were all FEV1’s of 62. To sum up how I felt this is how I would explain it. It was like I was in a race trying to catch the runner who had a 10 second head start. The cold that I have was like holding me back 10 seconds at the start of the race.
But here is the thing my FEV1 was significantly down. I asked the RT when was I ever this low. He said I blew a FEV1 55 three years ago. I was kind of shocked by that as I don’t remember a number that low. Over the last 2 years I have been between FEV1 68-74. So I know for one thing that my FEV1 will bounce back up when I start to feel better. If I look at my FEVC 93 it wasn’t that far off from my 96 last time. That makes me feel better because my FEV 1 will come back up! I just have to think about it for the next 8 weeks. I know people tell me to not dwell on it but I know I will. But I will be back next time to conquer my PFT battle!
As for me taking any antibiotics we will wait to see if I can shake this cold on my own. My doctor also wants to see what my culture shows. So other than a low FEV1 it was a “normal” clinic appointment. But the one thing that I loved about my appointment was Alayna and Maria were there. This was the first time for Alayna to visit the CF clinic and she did really well. My doctor loved her and paid more attention to her than to me. I am already use to this as this seems to be the new “normal” in our house.
After my clinic appointment, we were off to get Maria’s blood drawn for her liver enzymes. Well of course by the time my appointment was over it was lunch time. All the lab techs and blood draw areas were either full of people waiting to get blood drawn or the lad was out to lunch. By this time Alayna was getting super fussy. So we decided to head to another branch of the hospital in another part of town.
We arrived at the branch of the hospital where all magic happened to help create our miracle Alayna. Since we had Alayna with us we took her to the IVF clinic. They were thrilled to see all of us. This was the second time the doctors and nurses were able to see Alayna. All they could say was how perfect she looked. Oh and Alayna loved all the attention. Maria was finally able to get her blood drawn at the IVF clinic to check her liver enzymes. The results were not going to be final until a few days.
Finally, the nurse called on Thursday and told her that her liver enzymes are elevated. OH NO!! It was crushing to the both of us : ( Her last blood test before this the liver enzymes were normal but on the higher side of normal. This time they were even higher. So why are they still elevated almost 10 months after giving birth to Alayna? That is the question that we are all trying to figure out. As some of you may know Maria has had an ultrasound, MRI, CT scan, and even genetic blood testing done on her liver. In all these tests, they have yet to discover anything that would warrant elevated liver enzymes. Now, its time to have a biopsy performed on her liver which was the last test they were talking about when we first started this process. The biopsy will be able to show if there is any cirrhosis or “fatty liver” or anything else that could possibly be wrong. The biopsy is scheduled for this coming Tuesday. I am thankful that by the end of the week we should know the results of this biopsy. I am hoping and praying that Maria fits into the category where some people just have unexplained elevated liver enzymes. It does happen from what we are told. So if you could keep this family in your thoughts and prayers that would be very much appreciated.
We are now back in the boat of unknown. This boat we have been in before numerous times over the last two years and it’s not something fun at all. But I know that we will land back on solid ground very soon. Maria is beyond a strong person and she has shown me that when you get knocked down you will get up and fight again and again. I know she wants nothing more to be healthy for this family and it really shows every day.
There have been people who tell me that we are such a strong couple and a family. I have to say that WE get stronger from these challenges that WE have faced TOGETHER over these last two years. In the last 2 years of our life, I have found that WE as a FAMILY may bend but nothing will ever break this family no matter what.
Tuesday, came along and it was lay off day at my company. First off I was not selected during this process. It still was a very sad day though. I came in that morning looking to talk to my friend like I do every morning to find out she was clearing her desk as she was one of the selected individuals. This was really awful to see my friend leaving this place like this. It was a shock!! But if there is anything that can be positive through this was that I made a great friendship. I ended up giving her all kinds of advice while she worked here and we really had some great chats. Not only did we talk about various things I was able to let her into my tight knit CF life. You will be missed my friend! But we still will be in contact as there is no denying that.
Wednesday, I was talking to a CF friend of mine and was asking about her most recent clinic visit. Unfortunately, there were talks at the appointment that no CFer would like to hear and that was the possibility of transplant. As awful as that sounds lets all be thankful that there is this option for us. As I have said to many people lately I believe you met people for a certain reason. Not only am I this person’s friend I am here to help provide anyone a positive boost when it comes to this community.
Maybe one of the biggest reasons why I am this person’s friend is that I am going to give her an opportunity to reach out to my mom’s cousin who has CF who underwent a lung transplant a year ago. If my CF friend chooses to go through with getting listed she will be attending the same clinic my mom’s cousin did when she got her transplant. As I mentioned in a prior blog post my mom’s cousin is very outspoken and reaches out to people who are going to be going through a lung transplant. I cannot wait to arrange a way for these two ladies to communicate. In life, its all about helping others and I hope this helps my friend.
Well to top off the week, on Saturday I had a visit to ER. Yep, you read that right. It was honestly my fault because I was being a moron and trying to open the garage door opener with a butter knife. My hand slipped from the knife and sliced my thumb open. There was a good amount of blood even from a butter knife. I sat down at the kitchen table and then before I knew it I heard Maria really upset on the phone. I apparently passed out because John and blood do not mix very well. I am so thankful that Maria was right by my side and I was luckily sitting down because who knows I could have fallen on the floor. The paramedics arrived and didn’t leave until I had coloring in my face. I guess I am pretty good at scaring people. It wasn’t my first time passing out from blood!!
Maria took me to the ER and I ended up getting 3 stitches. I have to have them in for over a week as the cut was pretty deep. Yes a butter knife is dangerous. I learned my lesson to never open anything up with a butter knife. Oh, and the paramedics opened my garage door opener very easily. Ugh what mess I made for me and my family.
So that is a wrap. The family and I are done with this week. I would like for you all to say a prayer or do whatever you do to keep Maria in your thoughts this week. She is the woman who keeps this family together day in and day out. Without this girl by my side every day I wouldn’t be the person I am today. WE WILL GET THROUGH THIS!!
Alayna standing with one hand!