one day at a time . . .

Archive for the ‘Uncategorized’ Category

Need a little patience

My previous post was me freaking out a bit. I’ve had time to process what’s going on and feel much better. Here’s how I explained it on my facebook account:

UPDATE.. So my cultures from the bronch did not grow any bacteria. There’s a possibility that this happened because of all the meds I’ve been on… the bacteria have a way of hiding away as a result. So the plan is to stop all meds and repeat a bronch in 2 weeks. Hopefully I won’t worsen in the meantime. If I do we’d have to choose an antibiotic by guessing! If there truly is in fact no bacteria, then we have to look into this further. Post tx is very different than pre tx. I just need to learn patience. I will get through this. Thanks for all your support and concern 😘☺💟..
So… we wait… to be continued!

Just Angry!!!

​Feeling very anxious and scared. Have had pneumonia all summer. About 7 weeks of iv antibiotics and as of my bronch last Thursday still have pneumonia. As of today my cultures have not grown anything! Dr wants to give it a couple more days and if nothing grows wants to stop my meds for 2 weeks then do another bronch. My peak flow has been down 50 points. My pfts are down 12%. Not treating the pneumonia could only make things worse. I’m so upset. Can’t stop thinking that this is just rejection. I’m so angry!

Bronchoscopy Results

So I had my bronch on Thursday and it’s not what I had anticipated. Pneumonia with thick mucus in both lungs! Really! After over 6 weeks of IV?

Plan: Stay on Zosyn until cultures come back. That could take 3 to 4 days!

This result upset me deeply. I became very emotional. I’ve heard of pseudomonas taking over and ending in death. I just assumed that would be me. When I got home I emailed my transplant dr explaining I was scared and if I was over reactung. I then cried myself to sleep.I later emailed my CF doc and explained what was going on. Her response calmed me down and gave me hope again:

Don’t worry. This happens sometimes. It’s from your immune system being suppressed and the Pseudomonas. The meds will work. I see that your organism is sensitive to polymyxin. Have you ever had that? It is sensitive to some other antibiotics as well.

There is also a new antibiotic out for Pseudomonas called Zerbaxa. I can’t see that they tested for it. Do you want to mention it to Dr. Shah or would you like for me to mention that we corresponded.

Please try not to worry. In the big scheme of things, this is really a manageable situation.  Are you taking nebulized antibiotics at home (TOBI, Cayston, Colistin, inhaled ceftaz) are some of the options. “

I shared these ides with my transplant dr and as it turned out she has discussed my case with Infectious Disease and they recommended adding Zerbaxa to the testing as well.

So I wait until it’s figured out!

It’s 3:30am on the 10th and I woke up with a temp of 100.2… UGH – why on a weekend!

Feeling Awesome !!!

I can’t believe how I just abandoned this blog since transplant. The first year was a slow recovery and dealt with depression. Then I tried to activate the 2 step authorization on wordpress and it totally messed me up and I couldnt get in! I finally contacted support and got the whole thing deactivated. 

So, here I am, almost 2 years post transplant and I’m feeling amazing!! It’s just amazing how as time passes I just feel better and better. Yes I had 4 pneumonias in the last year as well as several bronchial tube dilations, but I’m crossing my fingers hoping for a good stretch of feeling great!

The CF walk is coming soon and this year our team is supporting CF as well as a new foundation; The Lung Transplant Foundation. Their mission is to fund research dedicated to chronic rejection, specifically BOS, as well as spreading awareness for organ donation. A CF cure would not benefit me now, but because of my connection and the fact that my son and some relatives are carriers, I cannot let it go. Chronic rejection is my demise now, so research in that direction is critical for me.

I hope to keep up with my posts. We shall see 🙂

TYB 6.6.12 ♡donate life♡

Just Reminiscing

I thought I’d look back at past posts pre transplant. I’m amazed at how soon I forgot how sick I really was. I mean I realize I was at end stage lung disease, but the details of the med reactions, the level of breathing difficulty, the emotions I went through. Here I am, almost one year post transplant… I can breath… I don’t cough anymore… I have more control over my life… it’s just amazing.

I wish I could go and talk to myself pre transplant and tell myself that its going to be ok… you will breath like a normal person… you need the transplant or your life WILL end.

I’m still worried about rejection. I understand that barring any other complications, rejection will take my life. But look, I just had almost a year of life that I wouldn’t have had. Every day is a gift and more time with my family. I made it to the first statistic – 90% live to the first year.  Now for the next statistic – 50% live to 5 years. If you think of it that way, it’s pretty scary. I have to work on not thinking of myself as a statistic. I have transplanted friends   that have lived over 10 years, and the stats were worse at the time of their transplant.

I’m enjoying life… I have an 18 year old that drives  me crazy. And it’s all good.

My donor, Bernadette, saved my life and I am forever grateful.

I added a Part IV above !

Did you notice, I added a Part IV to my story.  Take a look. It’s above this post!

How things have changed.

It’s been over a month now that I’m on oxygen 24/7. I started my 6th round of IVs for 2011 on 12/24 and will be completing them later this week. After all this, how do I feel???

  • Just walking down the hall in my house makes me run out of breath
  • I need to raise the o2 when I go wash up in the morning because I run out of breath
  • Basically, everything makes me run out of breath
  • Looks like I will be on o2 continuously going forward
  • Bottom line: my CF took a drastic turn south in November/December

What now?

  • finish up my transplant evaluation testing
  • probably get listed for double lung transplant
  • may require IVs often
  • pulmonary rehab at a local hospital

Boy how things have changed.

I was always so fearful of the transplant option. I always felt like it meant that I would only have 1-3 years post transplant to live. But, now I understand that when you are ready for transplant, you are in fact extending your life as my life as it is now is numbered and is no way to live. I am so thankful for all my CF Transplanted friends! They are doing so well and are living into 5 and 10 years post! I even met someone that was 20 years post! I am definitely scared. I don’t know if I’ll be part of the good statistics. But I WILL DO WHAT I HAVE TO DO TO STAY ON THIS EARTH WITH MY FAMILY. Part of me hopes that I will start to improve and will be able to postpone the whole transplant thing. Oh how I wish this to happen. Only time will tell.

OH, How Things Have Changed. . .