Last day in PA

Yep today is my last full day in my mom's house.  Tomorrow morning I am heading to Patti's up in NY for the 3rd anniversary of her transplant.  P, S, and T are meeting me up there and it will be loads of fun!

Everyone has been asking me if I am nervous to move.  My reply...not at all.  Don't get me wrong.  It is a bit nerve wracking figuring out when I am renting the truck and moving everything (Feb 13 is when the rest of my stuff will get to MA), but that is normal worries.

What I am not worried about is moving somewhere 300 miles away and moving in with a man I have only known for 4 months.  Crazy huh?  But it feels OK.  It doesn't feel scary.  I have faith that if/when we hit road bumps we will be able to glide over them.  Granted I have never lived with a guy before so this should be interesting, but the 3 weeks I spent up there over Christmas and New Year's gave me a good idea of what it will be like.  And yes I am still going back.  It just feels right.

I am very very excited to start my new life up in Boston, and to make the place home.

Babies R Us

Odd title I know but this blog is all about…you guessed it…babies. 

Somehow this morning  my mom and I got on the topic of birth control.  I’m an adult, my mom knows I am sexually active so this isn’t such a strange thing.  At least not in my happy little world.  She did give me grief for not being on any since stopping the Mirena last month.  But it messes with my system too much and to me it is not worth it.  If I am meant to get pregnant I will get pregnant, but I don’t foresee that happening.  This little conversation brought back some feelings I had had while away for the past month.

I want a baby. 

There I said it.  It’s true.  I want a baby, I want a child.  It will never happen and no I won’t do anything rash, trust me.  But I still want a baby. 

I was home last week watching TV and working on my nephew’s cape when the feeling just hit me.  I assume there was a commercial or something on the show I was watching that triggered it, but whatever it was it made me want a baby.  And want one with my boyfriend.  That was a strange new sensation for me.  In the past I have wanted a baby, but never wanted one with the man…err boy…I was with.  So for me to feel this way was odd, but a good odd.  It meant something to me. 

My whole life I have wanted children.  More importantly, I have wanted a family.  Granted there are other ways to have that family, and I am in one now (boyfriend has a daughter).  But when I was sitting there I wanted a child that looked like us, that had our weird quirks, that was us.  I wanted our baby. 

The feeling has died down since then, but it still lingers.  It lingers when I see a newborn out and about.  It lingers when I think about the few people I know that are pregnant.

For now I will be grateful for a wonderful niece and nephew, supporting family and friends, and an amazing boyfriend.

BTW, nothing beats walking into your brother’s house and having your nephew run up to you and wrap his arms around you.  It was the best feeling.

Clinic Appointment

Today's appointment was much better than I had expected. I thought for sure the spasms and clamping would have left my lung function less than last time. However, I was pleasantly surprised when I blew a 40%! Granted its only up from 38% back in December, but its up and not down. I don't remember what my other numbers were last time but my FVC is at 65% and my 25/75 is at 14%. So my small airways still suck, as usual. I left with a prescription for Cipro so I can get the last of whatever is brewing in there out and maybe I can see 45% next time I come.

The rest was basically routine. My weight is stable. My O2 and HR were normal for me. My only issue was the slight fever I had - 99.1. Odd because I felt fine. And even odder because last night with my wicked headache I felt like I had a fever and was even flushed but I was only 98.8. So maybe it was a delayed reaction.

Dr H and I discussed my move some more. I told him I want to keep him as my doctor for as long as possible. To which he said in 20 years I'll have to be on my own without him (lol you need to know him so you can picture him saying this and why I laughed). He said that I should still call and set up a relationship with MGH or B&W so if I have an emergency like an acute bleed or obstruction I will have someone to call. When it comes to routine clean outs we can figure it out but we will find a home care IV place that works in Boston so I don't have to spend 3 weeks down here in Philly. I feel much better having made this choice.

One thing he did mention is to make sure my insurance will cover anything I need to have done in MA. If I do need to be admitted up there, I need to make sure I will be covered. That is easy enough, I can call next week and find out. He doesn't foresee anything major happening and I seem on the "right" track with my "garden variety" CF, as he calls it. So I can only hope that he is right and I don't have any unforeseen issues until my slow and steady decline leading up to transplant land.
Sent from my Verizon Wireless BlackBerry

Thinking about keeping my doctor

As the title says, I am thinking I might not switch doctors. I really really really don't want to leave Dr H, and if I don't have to then why should I right?

My thoughts are that I will see him every 6 weeks. That gives me a reason to come down to Philly to visit everyone and to stick with my regimen.

The only issue will be when I am sick and need to be seen that day (which I could solve by having a primary that consults with Dr H), and when I am in need of inpatient treatment. I have clinic on Wednesday and I am going to run this all by him.

I really don't want to switch him out. He knows me and I know him. We have a good dynamic, and there is no reason to change it. The thought of facing a new doctor, with a new way of treating and a new way of asking things scares me. I don't deal well with things like that and I think that keeping Dr H will be good for my mental and physical well being.

Plus I think he will be happy to hear it too.

The reason I was switching (besides the obvious 5 hour drive time) was that the insurance I was going to be getting was MA only doctors. So Dr H would have been out. But I qualify for that 65% discount on COBRA so I can keep my current (albeit expensive copay) insurance and see my wonderful doctor!!! To me that is an expense that is well worth it!!!!!!

Bodies and homes are surprisingly similar

Given my design / architecture background I thought this post would be funny and informative.

A few nights ago I was laying in bed thinking about a Cyster whose initials are MEP. It made me giggle. MEP in the design world stands for Mechanical, Electrical and Plumbing. It made me giggle because it relates to a Cyster's body as well. Also Fibros, I won't leave them out of this no worries.

Our bodies are much like those of a home. We have mechanical systems (arteries, heart, lungs etc), electrical systems (brain, spinal cord, nerves etc), and plumbing systems (stomach, colon, bladder etc). Each part of the system need to be working properly in order for our bodies to run smoothly. If they don't we end up seeing a doctor / specialist who will diagnose and fix the problem (hopefully). Much like a home owner must do when something breaks in one of their systems.

Now doctors and those with chronic illnesses have a slight advantage over the average person. We are able, for the most part, to diagnose the issue and seek out the proper treatment. This is also the case with those that work on the aforementioned home systems. Plumbers and electricians can find the issue and resolve it on their own, or if they can't do it alone, they know someone who can fix it.

Another similarity - we (chronically ill and doctors) are also sought out for answers regarding problems friends and family may be having with their bodies. Or to recommend a doctor to someone. Much the same as a plumber or electrician is asked for advice from family and friends about who to use for the work that needs to be done on their homes. Or in some cases they are asked to do the work themselves. I have been known to perfom CPT on a friend with a chest cold from time to time.

All of the systems, be it in the home or the body, need upkeep. We need food, water and medicines to keep us running at top speed. A home needs to be maintained in order for it to provide us with a clean living environment.

I know it isn't an all encompasing blog and there is way more that can be added, but I thought it might give everyone a fun little thought for the day. Is there anything about your job or career that you can compare to the way a human body works?

(disclaimer - I don't have spell check so please excuse any spelling mistakes, it is not my strong point in life lol)

Colistin update

I did my final Colistin treatment this morning. Granted I only had 8 days worth but still. I am not refilling my rx. I just can't do it. I want my lungs to go back to normal.

I talked to Dr H on Thursday and he started me on 10mgs of Prednisone twice a day. And to start tappering to 5mgs at night on Saturday night if I was feeling better. I am still on 10mgs twice a day. I feel no different, but yet I don't feel worse. So maybe that is something. I am supposed to call him today to update him. I really hope he doesn't want to see me on Wednesday. I will go home if he insists but I won't be happy about it lol.

At least it is not an infection and entirely from the drug. That is a relief I think.

My coughing attack Friday night when I got into bed left me at 80% O2 and 173 HR. Insane!!!! That has been the worst by far since I started. At least when I am watching my numbers. I have my pulseox glued to my hip so I can monitor. I probably should have my O2 on constantly to help but when I am sitting here my HR is only about 110ish and my O2 is in the 93-94 range which is normal for me. It's the up and moving around that gets me!

After I talk to him I will update my post.

You know its bad when...

A seven year old asks you if you're ok.

Yep my boyfriends daughter (who has seen her uncle go through all this and get a double lung transplant) asked me tonight if I was sick. I replied no its just my medication. To which she said oh ok just checking cause you're breathing all funny.

Ah good old Colistin.

I started Colistin again Saturday night and as of Sunday morning I'm horribly SOB and coughing up a storm. Its mainly a dry cough. I'm actually relieved I feel this way because now I know without a doubt it was not the study drug that did this to me. I never really thought it was but its nice to know for certain.

Looks like a call to my clinic is in store for tomorrow. I have a bunch of Prednisone I'm hoping I can just take instead of being admitted. I'm still in Boston and if he wants to see me I'm gonna have to head back down to Philly and I'm just not ready to do that.

I'm at a loss. This is the last inhaled antibiotic I have that I can take. If Azli gets approved soon maybe I will be able to take that. But this was my last and final try with Colistin. TOBI does the same thing so it leaves me with nothing to do. Does this mean whenever I get an infection I HAVE to do IVs? I like the 28 day cycle to keep me healthy. Maybe I can just alternate oral Cipro instead. I wish the inhaled version was out so I could do that. It worked like a charm for me.

For now I'll just be back to my 3 treatments a day plan and hope that my lungs open up.

Happy New Year's!!!!!!!!

I can't believe it is 2010 already! I feel so old lol. I also feel like I am slacking on all my readers. I apologize for that. Being at Peter's house I don't have access to any of my stuff on my computer (I might go buy a laptop this week and then when I go back home I can transfer everything to it so I am not so slacking anymore). There really isn't much to update all of you on. My lungs still feel the same. I am enjoying not working and relaxing at his place. Spending time with Tina and Shawn and Peter has been fabulous.

We had a great time on New Year's. Went to a party and saw a band. I stayed sober to drive home haha. I didn't mind. I actually got drunk beforehand while making dinner for everyone so it worked out well. It has been the first year in about 9 years I have had someone to kiss when the ball dropped. Wow how sad is that? We made up for it though, it was a great night (any sexual inuendos should be left at the door people I was not refering to that haha).

Hmmm what else to blog about? I relly don't think there is anything else.

I will try to update this week if there are any happenings!!!

Love to you all and hope everyone had a safe and fun new years!!!!!!!