Monday, February 18, 2019

Hundred People Search

We have added another new person to the registry. This puts us at 61 to go on the Hundred People Search (HPS). 

Hundred People Search

We've added two more to this year's Hundred People Search - HPS....this puts us at 62 to go in the next three weeks. Actually, we are doing very well. HPS is very rare and we've never actually made 100. 

Thursday, February 07, 2019

Hundred People Search

Another update. We have added another HPSer to the registry. This puts us at 64 to go on this year's Hundred People Search (HPS). 

Monday, February 04, 2019

Hundred People Search

We have added three new people to the HPS registry - this puts us at 65 to go on this year's Hundred People Search (HPS). 

Sunday, January 27, 2019

Nearly 12 months post transplant



I’m on the home stretch of making it to a year post transplant. The first year feels like such a big mile stone! So much has happened! I tell people it has been a roller coaster ride, and I’m not kidding.

I’m at a stage where I think I’m experiencing post transplant PTSD. Actually, I wonder if the psychological world needs to come up with another term for the emotional fallout from traumatic medical events. For me, at least, it isn’t the same as what I read about in people who have experienced PTSD from combat, assault or other types of trauma. I don’t startle easily. I’m not worried about what might be around a corner. What I am is emotional. I know some of that could be the medications. I can cry at the drop of a hat. Little things bring back memories and the waterworks just starts flowing.

This time last year I had the transplant clinic appointment where they told me I should start thinking about coming into the hospital. It was one of those mile stones I had prayed I’d never reach. I really, really had hoped my lungs would come while I was still at home. Last January was such a tough month, but at the time, I didn’t get emotional very often. I had to get business done and I couldn’t afford to fall apart at every task.

I took Finley to the vet even though it wasn’t yet time for his checkup. I wanted to make sure everything was okay with him, that his vaccines were up to date etc. so that no one would have to deal with that stuff while I was sick or if I died.

My sister-in-law and I went to see an attorney to get my legal world in order…living will/advanced directives and power of attorney. My health issues have pretty much drained away any assets, but I wanted to know if I needed any type of will? It was a strange place between planning to do battle to live, and getting ready to die.

The really crazy thing is at the time, I felt so strongly I’d get my transplant. That is crazy because so many, many people don’t. It was crazy because it was a coping mechanism completely out of character for me. I usually envision the worst case scenario, deal and process that, and then everything that happens is better than expected. But this time, even though I was preparing for the worst case scenario, I wasn’t in that head space. The human brain is capable of amazing things. This sort of compartmentalizing got me through.

What I really feared was sitting in the hospital with nothing to do but sit around and think. While I was at home, I had my routine, my Finley and my work. I could live in the moment without as many reminders about how dire things were getting. I know that might seem strange to anyone who saw me then. I was on so much oxygen and struggled to do simple things, but from my point of view, it was a process that happened gradually. Every change just sort of got adopted as my new normal. What really scared me was getting to the point that I was in the hospital. You can’t pretend everything is okay when you need so much oxygen you can’t live in your own house. I knew that once I was in the hospital, there would be a progression of things that would happen as I got worse and I knew what they would mean as they happened.

Waiting for a transplant is a mental game, and I knew I was about to enter the toughest round. I knew that once I went into the hospital, chances are I wouldn’t be coming out.

So, this time last year these were all the things going on in my head. I didn’t want to talk about them much because I know family and friends had their own things to cope with regarding me. I remember one day the sun was coming in the window and everything in the apartment was quiet and peaceful. Finley was sitting in a sun spot. It all seemed so normal, and yet, everything was about to be turned on its head. It was coming. It was only a few weeks away, if I didn’t get the call.

I’m seeing the photos that come up on Facebook as memories, and sometimes, they make me just break down and cry because I remember what was really going through my head when I posted them.

Last year I took Finley to get his photo taken with Santa Clause at PetSmart. I knew everyone thought I was being silly and it was a dumb thing to do. In my head, however, there weren’t many pictures of both of us together. Finley is like my little family, and I wanted a good photo of us together. (The only other good ones I had were the ones Frankie took – thank you Frankie!) The PetSmart photo didn’t turn out to be that great. It ended up being a sales person taking photos in terrible lighting with her phone. If I’d known that, I probably wouldn’t have done it…but that was the method behind the madness.

As frustrated as I feel with my lack of progress in my recovery in some areas, things sure are different than they were this time last year.

Friday, January 25, 2019

Nebbing and multitasking



This is, hopefully, my last month of having to do nebulizer treatments four times a day for an hour each time to combat one of the infections that came with my new lung. One of the most frustrating things about these treatments is the time. It wouldn’t be so bad if I could get work done while I was doing it. The tricky part, however, is to keep the medication flowing properly, I have to hold my head level and straight. Not seeing well, I tend to bend forward to look at everything. I’ve tried doing the HPS Network’s social media while I’m nebbing. That works as long as I can hold my phone up right in front of my face without bending my neck or chin. Eventually, my arms just get tired! I’ve tried knitting. That works as long as I’m doing something very simple. I’m not a talented enough knitter to do complicated stitches without looking (although I have blind friends who can do it.)

Then this morning I had a shower idea! My best ideas tend to come to me in the shower. It might be hard to do work on the computer without bending forward, but I could blog with my eyes closed! I touch type so I don’t need to see what I’m doing to write! Eurika!

It kills me that I’ve invested so much in telling my HPS story over the years, and yet this year, probably one of the most important, I’ve barely written a thing!

So, here’s hoping that this last neb month will help me catch up! Happy writing!

Thursday, January 24, 2019

Hundred People Search

We've added another person with HPS to the registry. This puts us at 68 to go on this year's Hundred People Search. Keep up the outreach! 

Wednesday, January 02, 2019

Hundred People Search Update

We have added one new person to the HPS registry. This puts us at 69 to go on this year's Hundred People Search (HPS). 

Thursday, December 27, 2018

West Wing Therapy



There have been times these past few weeks when, despite the ever growing mountain of work on my desk, and despite the level of stress I feel about not being more efficient and reliable, I have to surrender. Some of the medications I have to take can make me very drowsy.

To try to help the weird feeling I’ve been fighting in my legs for months, the transplant clinic decided to increase one of my medications for neurological pain. My legs don’t hurt. The problem is they don’t anything…hurt, get tingly etc. They feel like your cheek does after you’ve gone in for a filling and the dentist has given you a numbing shot. You can still “feel” in your cheek, but you can’t really, or that filling would hurt like crazy and they’d be peeling you off the ceiling. That’s the way my legs have felt since the end of June, to varying degrees of weirdness.

I’m not sure why increasing this medication would make them less numb as opposed to more numb, but I’ll try anything. I had worked to wean myself down in the first few months post-transplant because I didn’t like feeling sleepy or having brain fog all the time. I’d rather hurt some, and think clearly, than be pain free but sleep all day.

So, while I’m prying my eyelids open with tooth picks and hoping my body will adjust eventually so I can function, I’ve been watching TV.

You can’t mess up TV. You can’t make a bad call, or say the wrong thing or do anything hurtful in any way because you’re too loopy when you’re watching TV. It seemed like a safe place to hang out in mental limbo.

I’ve been binge watching The West Wing. Like most TV, it’s this wonderful alternate universe where the problems of the world can be debated in ways we can only dream about in real life, and actual solutions occasionally get implemented – all in under an hour! It’s much more soothing than watching any of the cable news networks (and I argue if you’re going to watch one, you’d better watch them all.) You might even call it “West Wing Therapy” – a place to go to think about real stuff in unreal ways. It’s a time out from what is that gives you a moment to entertain thoughts about what could be. I find myself wanting to keep a pen and paper handy to write down some of the lines and zingers used. It must have been a blast to be one of the writers on this show!

I’ve made a few observations in my West Wing Therapy sessions.

1.Evidently I have no fashion sense. Not that this is news to me. I’ve never laid claim to an identity as a hipster, or someone trendy or cool. These are probably not the words I’d use if I were trendy or cool. The West Wing is a show from my youth. When I’d watch shows from my parents’ youth, they might have been good, but they always seemed, well, dated and campy. Why doesn’t The West Wing feel that way to me now? The only things that seem out of place or dated to me are the flip phones and the lack of flat screen TVs.

2. It may be around 12 years since the last episode ran on TV, but thus far I haven’t run across a script that wouldn’t totally work today. It’s just a few of the details that have changed. We do have same-sex marriage now, and the HPV vaccine they refer to as being researched in one episode is a reality now.

3. For someone who has trained her dog to search out the phone or finger pulse ox because she can’t see well enough to find them, I notice the most unimportant details sometimes. There are a lot of scenes in the Oval Office where the family photos on President Bartlett’s desk move positions, even though the entire scene is supposed to be taking place in minutes. Who notices that? Who cares? And why, of all people, does blind-as-a-bat me notice and then be disturbed by it? It’s crazy town I tell you! Crazy town! Yep, even hit rewind to make sure I really saw it.

I can’t explain it. I do think the medication is helping my legs. It definitely is not helping my brain. I’m sticking with it for now. When you don’t drive, getting the ability to walk without planning every trip out the door carefully from a leg standpoint (the way I used to plan from an oxygen standpoint) is important.

Before transplant, ironically, I was in the best shape of my life. Pulmonary rehab involved exercise several days a week with your own personal training team. I’ve never been athletic. I don’t have a natural talent for it. Gym class was one of the places teasing was the worst for me when I was a kid. I grew up in the era where gym teachers let “captains” choose teams for games. Yes, nothing like being the blind kid in this scenario, especially when most of the games involved fast-moving balls. But in pulmonary rehab, no one was in great shape. Everyone, except my friend Ben, was at least 20 years older than me. I didn’t feel awkward, competitive, stared at or judged. I was competitive with myself, the way it should be. The environment was supportive in the right places and challenging in the right places. Pulmonary rehab, where have you been all my life? I do miss it!

I had even set a private goal for myself to try to do a 5K in Oyster Bay this past October. I would have been about eight months out. For many post transplant, that would have been a piece of cake. I didn’t plan to run it – just to walk – so it seemed pretty achievable. That was before transplant, a round of rejection, and all these leg complications. It ended up being a non-starter anyway. The 5K was cancelled so I never even had to tell anyone it was my own private little goal.

Sometimes I get down because I’m not achieving goals that a year ago I would have thought might even be too easy this far out from transplant. What perspective a year gives you! Even so, I would do it all over again in a heartbeat. My quality of life is better now than it was before transplant. Even if it doesn’t improve further, I can cope. I just kind of wish I knew a little better what is reasonable and achievable so I can plan life accordingly and set reasonable goals. Constantly failing, whether it is my fault or not, feels crappy! But, if someone gave me an answer, I might suspect they were setting the expectations too low and not totally believe them anyway. You just can’t win with me.

For me, a little respite in the world of the fictional West Wing, with its gigantic, yet solvable, problems has been fun and relaxing. A few days have passed since I started writing this, and the brain fog is improved. I’m not exactly up to my normal self, but it is getting better. I’m glad because January is going to be a very tough month and I’m going to need every last advantage I can get both physical and mental, to get through it.

Wednesday, October 31, 2018

Hundred People Search Update

This week we added two new HPSers to the registry - this puts us at 70 to go for this year's Hundred People Search.