Update: November 2013

[aero63]

Hi everyone!

I was asked to update.

I am holding pretty steady, a little decline in my breathing of course, but that is expected. I try to keep exercising either indoors or just walking and window shopping.

I currently am fluctuating between every 2 months and 3 months for visit to Penn Tx Center. I always get an order for blood tests and spirometry.

If I am on an antibiotic, I have to let the transplant nurse know. I do get quite alot of infections which points me back to the starting board on exercising.

My spirits remain good and I truly expect to be waiting a good while for those new lungs!

Please, if you have any questions, let me know. I can't think of much right now to update about but asking questions might bring something to mind for me.

[Blossom/Jackie W.]

Thanks Antoinette. We really appreciate it!

Few quick questions if you don't mind....

So; you've been on the TX list (officially) for how long? and

I may have asked you this before but.... you have many allergies. Especially antibiotics. How are they able to work around that? and finally...

Are you on 0xygen 24/7 yet?

[aero63]

I am not on oxygen 24/7 yet. However, it is as needed now and not just for exercising and sleeping..I have been wearing it more frequently around the house with more little stuff and of course most of my mornings. I always carry in the car when I venture out and if I am doing a mall or grocery trip I wear it.

My allergies are many for sure! I was told that whatever they put me on in the hospital they will work around it..and use some substitutes. However, if I catch something outside of the hospital after transplant and a heavy anti that I am allergic to is needed, I will have to be put in the hospital till well. That was way back and I don't know if they have a newer method or not, but hey thanks, I will ask them next time I go.

I have been on the waiting list since Julyof 2011 and received my first call in November 2011 and if you recall when I spoke to on the way to the hospital, Jackie, I was getting ready to eat Chinese for dinner, .

I hope this answers some questions. I wonder if they will ever let me try other newer treatments if they come out, medication wise. I think they hesitate to change too much when on the list.

[deltagirl]

Hi Antoinette,

Greetings from a fellow transplant awaitee (?). I have been on the list here in Vancouver, Canada since September 2010, so we've both been waiting quite a while. Sounds like you are in a better place than I with your upbeat "my spirits are high" post and it did me some good to see that! I am better these days with regards to the waiting and seem to have found some equilibrium in this crazy situation. I no longer jump at every beep thinking it's my pager going off only to realize it's the coffee maker or something silly like that. Though when they do the "test calls" from the transplant centre every two weeks I am sometimes caught off-guard for a few seconds till I realize what it actually is. I've never had a false alarm but my pager beeper every so often beeps due to low battery in the middle of the night which sets my heart to racing as I'm sure you can imagine!

I am on oxygen 24/7 these days and have an FEV 1 of about 13%. Do you mind if I ask what yours Fev 1 is? You are certainly more active than I am these days, so keep up the good work!

[Blossom/Jackie W.]

I DO remember that call Antoinette! And here's hoping you get another VERY soon!

One more thing..... if there's only one lung availiable, do you get the opportunity to accept or decline?

[aero63]

They really try to do both lungs, Jackie. I think if I am at death's door I will accept one if given the opportunity. I am certainly not at that point.

Deltagirl, I remember my cousin having a page for her transplant. They take our cell numbers but don't give us a pager, I guess they would if they had to, but never asked. Trial calls? ooohhhh no I do think I would be on pins and needles with those. I don't like the idea of having to answer thet phone even if I don't know who it is, telemarketers and such, but I remember when we didn't have caller ID.

I don't do numbers anymore. I think I was obsessed at one point. I take my papers and file them. I was told many years ago when I joined a forum that it is how you live. So, I live as I can and let no number limit me. Sorry, just a coping mechanism for me. The doctor knows and that is what is important to me. I know that your numbers are probably much lower than mine.

Do try to stay upbeat while you wait and I truly hope that it is not much longer. Do what you can and find that something that pushes you to keep striving and going forward both mentally and physically. This isn't to say that I don't get depressed but I just find a way out.

Best of luck Delta!

[deltagirl]

Thanks Antoinette. Just thought I'd add that the usual procedure at my hospital is to transplant COPD patients with a single lung due to the facts that there are so few lungs available, there is such a dire need for them, and you can breathe perfectly well with one lung as a few people here can attest to I think. Also the surgery itself is half as long and the recovery not quite as arduous. I expect to get a single lung, but if two are available with no other takers then I will get a double. The longevity stats are slightly increased with a double lung transplant.

By the way I admire your approach as to the numbers thing. I do admit to being a bit obsessive myself, but that's how I like to keep track of things - to each his own, right?