These are some of the struggles I have NOW, basically 26 months into chronic rejection/BOS with a lung func of about 44% FEV1 and 93% Forced Vital Capacity (BOS attacks the small airways so my Lung Capacity has dropped but is still good. It's a very different feeling to lung decline due to CF)
The key clinical feature of BOS is the development of airway obstruction with a reduction of forced expiratory volume in 1 second (FEV1) that does not respond to bronchodilators
See complicated article about BOS here.
After having completed photopheresis almost a year ago and basically no more treatment options available or suitable for me, I now find myself in a unique situation. I have semi-stable lung function, with nothing wrong with me apart from breathlessness with exertion. The rest is fine, I get sick less than most of my family members and like I get told all too often "you look great". That's the only "physical" struggle. Mentally there are a lot more! Here goes...
- Moving forward in life. Your decision making regarding so many things get messed up. Some were dealt with right in the beginning, like having kids. You can't have kids (via surrogacy or adoption or pregnancy) when you are in this position, Career wise it is tough and has been for the last 2 years. Lungs aren't stable enough for me to feel safe to make a career move. What if I take a risk and make a change and then lung function suddenly becomes less stable? Would there be technicalities regarding pre-existing conditions? So it stands to reason that I should stay where I am. It's safe. So now that I'm married, and we bought our own place the natural order of things are interrupted.... no kids, no grand-kids, this will just be me and Chris and the cats going forward. Friends who got married when we did are having 2nd children already, and you become a bit isolated in terms of socialising.... not seeing those friends with kids often anymore. and some friendships might be lost forever as we don't share all their interest anymore.
- Finances.... Do you spend money on travelling and having fun while you still can? Or are you responsible with your finances knowing at some point your salary might stop? And I have a husband to take into consideration in these arguments as well.... I can't go into crazy overdraft and go wild, I don't even have life insurance and can't leave him in the shit when I'm gone! I've heard stories of people who travel the world post transplant because they base their calculations on statistics.... they end up almost broke and homeless due to beating the stats!
- Living life to the "full". For an average 30 year old that might include some irresponsible behavior. For a transplant patient it might just mean eating sushi and biltong. Where do you find the middle ground? Do what you want to do without being too "naughty". I think it's easier for the older transplant patients in their 60's to obey all the "rules" 100% because they HAVE lived out their 20's and 30's to the max. Some are even in the position they are in due to previous life choices like smoking. We (young and/or CF transplant survivors) have NEVER smoked, and survived our teens as best we could. Now in our 20's we suddenly feel HEALTHY. How do you enjoy this without breaking any of the rules? You have to find a middle ground. But it can be hard (and sometimes you might not succeed).
- For me being "motivational" has also become hard. It's fine to chat to a stranger... I look normal so I don't need to mention my rejection, It's all just "Wow you're 7 years post transplant kicking ass! Let's drink to the next 70 years". No details given and all happiness. But trying to motivate patients on the waiting list that you know you will probably walk a journey with is harder. It's not all moonshine and roses anymore, and who wants to depress someone on the waiting list??? I normally just try to brush over the rejection part like it;s no big deal but that won't work forever. Tricky one... All I can say to them is that transplant is WORTH IT and I would do it all over again in a heartbeat, even if I only survived a year post transplant.
- Then finally there is the death-guilt thing. I don't have the right to mope having come this far and having lost Gail, Melissa, Francois, Shamone, Dominique, Lynn, Ninette, Landi, Helen, Louis and Gustav, to name just a few. I'm sure they wouldn't have minded dealing with these issues right now.
These are just the issues I'm comfortable sharing on my blog, there are more! This is just a venting post.... Please don't ever think I'm not totally grateful for my 7 years, 1 month and 18 days "extra" that I have been gifted so far. It is a strange place that I've been finding myself in but hopefully there is a point to all this.