Thursday, March 12, 2015

Struggles with Chronic Rejection and Life right now

I've decided to put some of my current struggles down on paper, as it was one of the reasons I started this blog as mentioned in my first ever post!

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.

19 comments:

Anonymous said...

I think of you often wondering just how at your age you do deal with it all. I am old (64)and cannot imagine the life you live and Tricia. It has to be tough emotionally for you and your husband and extended family as well. I have chronic illness, Multiple Sclerosis and my husband now into years of Alzheimer's and he is really starting to slip. but we lived, and had a family. Some of our dreams are gone, but we have had a good life. Thus. I cannot imagine how you feel. I HATE the "you look so good" on days I feel like death. I an imagine that is 1,000 times worse in your shows. Love and prayers to you Alice <3

Shari judd

cindy baldwin said...

Alice, I love you! Illness can put you in such a strange in-between half-place anyway, and being stable but with rejection must take that even further. Sending love from the other side of the world.

Sarah H. said...

Alice, I have been following your blog since I was in graduate school for genetic counseling (2006-2008) and I really appreciated this post! It's nice to hear your perspective and I do think you're doing a great job! You're right that those are some tricky things! Thinking of you and hoping you find a good balnce.

Sarah H. said...
This comment has been removed by a blog administrator.
Wendy Gardner said...

Dear Alice, I have followed your blog since Susan Pretorius (a colleague and friend) shared your story with me. None of us can begin to understand how you feel but I have always been in awe of your positive outlook and love of life. You are a true inspiration to all. ❤️

Alice said...

Thanks for all the amazing comments guys! Miss getting comments on the blog!

Sasha said...

Alice my angel, you are such an incredible person. I am so sad that you have to go through this. Just know you are loved and are making a difference in people's lives. Love you my sweet

Sherry Boyle said...

Alice, I have followed your story since before your transplant (came here from Tricia's site) and I am in awe of you! Thank you for sharing so honestly with strangers around the world. You are in the thoughts and prayers of many, including me. One of my favorite scriptures is Phil. 4:6-7. It is such good advice from Paul for all of us! If God has us still on the planet, then He has something He wants us to do. Ask Him each day what He would have you do that day. He will lead and guide you in amazing ways! Little things, big things . . . just live for Him and lay all your burdens at the feet of Jesus who loves you more than you can imagine.

Alice said...

Alice onthou ek hetvir jou gese dat jy vir landie ook moet leef.jy is nog altyd in ons harte en sy het ook gese sy doen dit al word sy net n maand gegun om te voel hoe dit is om net genoeg asem te he.ons sal altyd onthou hoe jy daar was vir landie en ook vir ons tot die laaste.sterkte liefie ons bid vir jou.ons weet jy is n fiter .stuur liefde vir chris.van tan.jeannie en oom johan.

Alice said...

Maike Dominique Risser - Thank you alice for your honesty and talking about the things some may never dare to talk about!

Alice said...

Miempie Leid - Jy n brawe vrou en n groot inspirasie vir baie!!!!!

Alice said...

Carli Niemann - Jy verras my elke dag Allycat. Jy is waarlik 'n baie talentvolle skryfster!x

Alice said...

Susan Pretorius - God se genade is groot - dink aan jou

Alice said...

Rida Viljoen - Ek het nie woorde nie. Net n hand wat ek uitsteek om n drukkie te gee

Alice said...

Jocelyn Teri - So refreshing to read something so deeply personal and honest... I am currently working on a piece on living with bipolar and hope I can be as real as you in my writing. Much love, Alice. Ps. You may not be able to have children of your own, but in your own way and with your own truths I am sure you will be an inspiration in so many young lives. xx

Alice said...

Arinda Pritchard - You know Alice, as I read this the one thing that really hits home to me about your blog is your absolute bravery. Many people will shy away from talking openly because it is the easy thing to do. I commend you woman! And there is a purpose to all this even if it isn't apparent right now.

Alice said...

Mariette de Waal - Wow Alice! Thanks a lot for sharing this. This is exactly what my sister went through - she mentioned almost everything you were saying!

Alice said...

Lesley Hurlbatt - Awe my beautiful friend I think your blog coversjust about all the things feelings, anxieties and thankfullness we transplantsshare Love yoou bautiful lady

Alice said...

Arinda Pritchard - PS: enjoy a lekka glass of red wine tonight and I'll do the same this side!