Tuesday, April 8, 2014

Still waiting...

My apologies for not having written an update in the past month. In all honesty, there hasnt been much to share. I had the bronch at UCSF on March 21st and I was happy to have the new lung transplant director be the one to do it so he was able to see for himself what my airway looks like. Today I finally heard back from my UCSF nurse coordinator about what they thought about my airway... Basically we still don't have a solid yes or no. The team brought up my case during a weekly meeting and the surgeon (who is a different person than the amazing Dr Charles Hoopes who did my first transplant) has never come across a patient with my unique circumstances which is my stenosis scar tissue issue, so she wants to do some research and speak to some other lung transplant surgeons about my situation next week during a national thoracic transplant conference. I'm really hoping that by Thursday of next week I'll have a firm yes or no and then we can finally move forward from there. I've been asked by a few people now whether I'll seek out another transplant hospital if UCSF tells me they aren't comfortable retransplanting me and the answer is absolutely Yes. Unfortunately Stanford hospital has turned me down for any type of care because I didn't get my first transplant at their hospital, but we still have options in Southern California that we can look into if need be. It would require us to relocate for a while, but we'll do whatever we have to do. We're really hoping UCSF will be my retransplant center because it's only a 2 1/2hr drive from where we live and I'm familiar with their hospital and routines already, but if they turn me down it'll be because they aren't comfortable retransplanting me with the risk outweighing the benefit. I definitely want a surgeon who is confident in the surgery she/he is agreeing to do!

As far as my current health is going, I'm happy to report that I don't think my lungs are declining very fast. I had the very large, sudden drop in Jan, but my lung function hasn't declined a whole lot since then. I did my 6 minute walk about a month ago and because it was done just 3 days after a bronch with laser I was able to do the entire 6 minute walk without supplemental oxygen. That's really great, but that doesn't reflect how my oxygen saturations drop in the weeks prior to a bronch. So it's a bit of a catch-22... It's great that my lungs are able to get some oxygen into my blood still, but when my stenosis is completely closed off and I'm only using about 20% of a single lung I'm not able to keep my oxygen sats high enough to keep me functional without getting lightheaded and feeling like my extremities are weighted down. So since I can't get supplemental oxygen ordered I have become much Much more home bound than I'm used to. I really only leave the house when I have a doctor's appointment or if Benito can talk me in to going out for dinner. I don't do any of our shopping anymore and have to get loads of laundry or small gardening tasks done over the course of a couple of days. It really sucks feeling so closed off from the world again and I just can't wait to feel Good again!

My appointment with the liver specialist is tomorrow morning and I'm so hopeful that she'll have an idea what's going on with me, or in the very least she'll know what tests to order so we can figure it out. The liver pain is almost always there now, but some days are worse than others. It skyrockets if any pressure at all is placed on my upper abdomen, so Benito has gotten used to not resting his arm on my stomach when we're sleeping. I think I've pushed his arm off me with enough force to scare him lol.

A little bit of exciting news is that Benito's sister and her husband visited us a week ago and asked Benito and I to be their cutie pie daughter's Godparents. We of course accepted and are very excited to be an even bigger part of our niece's life.

That's about it for now. I hope you're all having a great start to your spring!

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