Thursday, August 21, 2014

Health Update: Plugging along

I haven’t posted an update in a bit. It’s been super busy and honestly, I just have days where I can barely keep my head above water and do what absolutely must get done that day.

All and all I am doing well.

I started a new medication and am hopeful it will help with some of this. It does take a bit for your body to adjust to it though. Some people have no issues, while others get side-effect symptoms. I’ve had some of those issues, but really can’t say for sure if they are related to the medication. For example, I’ve had stomach upset and some nausea, but then again with my gastrointestinal issues, I go through times when I have that already. It’s hard to say if it is related or just bad timing. Either way, it doesn’t matter. It isn’t so bad that I can’t cope with it. The biggest issue isn’t even so much the stomach upset as it is the getting up every 40 minutes or so all night to go to the bathroom. A few nights of that really wears a person out! Grin! Today I’m having some mild tummy issues, but the bigger problem is I’m just tired. It makes it hard to focus and concentrate well. I find the fatigue also makes me forgetful.

Thankfully, I go through a few days of this with each increase in the medication, and then things seem to level out. That makes me think it might be related to the medication. If so, I just have one more increase to go and then hopefully, we’ll be over this little speed bump and on to the next one.

Thanks again to all of you who are offering support and who have helped with my fundraising for the move and the transplant. I started holding off on some of my thank you notes because I wanted to be able to give an update about the plan when I was thanking people. Now, I can get back to that. Grin!

Saturday, August 09, 2014

Health Update: The news is in – a plan is forming

I heard the news I was waiting for and now I can begin to target a move schedule! Yippee!!! I still have to sit down with my team and look at the calendar and make sure we are all on the same page, but I think it is looking like I’ll be free to leave the Kansas City area in February. The catch is this is a horrible time of year to try to find a low-rent, ground floor or elevator, and hopefully dog friendly apartment. That’s a really tall order even during the best time of the year for the apartment market.

So, we will see where we are at in February. If things are unchanged, then we don’t have to rush. If things start to change quickly again, then the plan is scrapped and we do whatever we have to do. If things seem to continue to change, but at a slow rate, then perhaps some of the wish list for the apartment will have to go to the wayside just to get myself there.

I am a planner. I don’t like having things up in the air. These last few months have been so, so, so stressful!!! Not just for me, but also for my family!

Last night my body literally ached – I think just from finally relaxing a bit and letting some of the tension go. I have a zillion things I need to do, but Finley and I had a little celebration. I got a people treat (been on a diet to lose weight for the lung transplant) and Finley got a special dog treat. We watched movies together until time for bed. It was so nice!

This morning we slept in, and then went for a four-mile walk. I need to clean house and I have a ton of network stuff to do, but it feels so good not to have this panic just under the surface that at any moment I’m going to have to pick up in a rush and move.

I’ve done a lot of packing already and am sort of at the point where I couldn’t pack much more without knowing when the move was going to happen. After all, if I keep working here for several more months, then packing up my office isn’t really helpful just now.

I’m going to miss having a dedicated office. There is no way I can afford a two-bedroom apartment in Arlington. I’ll be lucky if I can find a one-bedroom I can afford with housing help. I’ve loved having a room with a door I could close to separate my work life from my personal life. I’ve loved having a place where I could leave my painting materials etc. set up all the time so I could paint or work on crafts whenever l liked. Work and crafts can look so messy that having them all in one space with a door you can close has been a welcome luxury. It’s a luxury that’s days are numbered! Grin!

Still, I’m feeling so grateful right now that it seems like a small thing. I’m so grateful for recent medical reports that are not worse than those in May. I’m grateful for all the family and friends who have done so much to help me do what I need to do to make this all happen.

So, for now, I’m still in the Kansas City area for a few more months.

Thursday, August 07, 2014

Health Update: What is the plan?

This is just a short update. I know that everyone in my life, and all of the generous people who have helped to raise money for my lung transplant, are wondering – what is the plan? So, the update is there is no new news yet. I am waiting on some answers that could greatly impact the move schedule. I thought we would have heard back by now, but it is taking longer than expected.

This journey is such a roller coaster. I get anxious about all that is on my mind and not being able to answer everyone’s questions about when I will move. You’d think after years of living with HPS and waiting on test results that could dramatically alter your life over and over again, I’d be good at this waiting thing. I’m not so good. I think I’m doing a bit better, but it’s more exhaustion over being anxious than true master coping skills – grin!!!!

So, for now, we just wait.

Thursday, July 31, 2014

Hundred People Search Update

We added a new HPSer to the patient registry this morning. This puts us at 91 to go on this year's Hundred People Search (H.P.S.) Keep up the great outreach everyone!!! 

Tuesday, July 29, 2014

Happy news in HPSland

Today was a great day in HPSland. One of our members had her first baby, a little boy! Another member who has been on the lung transplant list a long time got his new lungs last night! I’ve been on cloud nine all day!

I had intended to work on some HPS writing that needs to get done, but spent most of the afternoon on the phone with members. That is important work to get done as well, but it doesn’t feel like work because I enjoy it so much. They aren't just members - they are all personal friends I treasure!

I don’t know if the people having these great events in their lives truly appreciate how deeply and how much they mean to many of us.

One of the first questions I always get asked by a woman recently diagnosed with HPS is: Will I be able to have children? There are a lot of things women with HPS, as women with any myriad of medical conditions, might want to consider before deciding whether to have children. The concern about whether it is physically possible and safe, however, can easily be taken off the table. 

Knowing you have HPS makes it possible to manage the potential bleeding risks associated with child birth. It is not knowing that can result is scary and life threatening situations. Celebrating the birth of a child in our community is an affirmation of life. It’s a passage of normalicy that we all treasure, besides just treasuring a sweet little new life in the world.

Especially poignant to me right now, however, was Julio getting his lungs. Julio’s older sister died from HPS. His mother and other siblings cared for her in her last years and his family have been through this process now several times. Julio was getting very sick and we were all very worried for him. These lungs came just in time! 

It is our 14th known HPS lung transplant. Every transplant that happens helps to pave the road for all of the rest of us who will need them in the future. The more of them we have, the less powerful the argument that HPS poses too high a bleeding risk for lung transplantation. We’ve now had 14 transplants in three different countries. It is a lot to celebrate!

Still, lung transplants are not a cure. It is more like trading one lung disease for another one. Not everyone can be a lung transplant candidate. We are all still dreaming of the day when we find a treatment that makes lung transplantation unnecessary. Now, that will be one heck of a party!!!!! When that day comes, I’d be happy to do the “I’m too Sexy for my Lungs” dance!!!!

Health Update: Pulmonary Function Tests

Last Friday I had my first repeat of Pulmonary Function Tests (PFTs) since being told I need a lung transplant. You can imagine, I was quite nervous about them. Along the way I am making all kinds of decisions. So many of them seem like gambles, yet they are literally life and death. Luckily my PFTs were a confirmation that, for now, I am making the right decisions. The plan can still change at any time, but for right now, we are just pressing ahead with handling some more immediate issues I have to get under control before I see the transplant center.

As for the results, I must confess, given how much better I’ve been feeling, I was secretly hoping for a miraculous improvement that would wow everyone. What I got was a mixed bag, but the important part is that, for now, I have stabilized.

My forced vital capacity (FVC) fell three points, but my DLCO (the bigger problem right now) went up three points. Machines can vary from hospital to hospital. For some reason, my numbers are always lower at KUMed than at NIH, so the fact that they were about the same was happy news.

Monday, July 28, 2014

Another new HPSer Hundred People Search - HPS

This morning we added a new HPSer to the patient registry. This puts us at 92 to go on this year's Hundred People Search - H.P.S. Remember, the most dangerous thing about having HPS is not knowing it. 

Monday, July 21, 2014

Hundred People Search

I am behind on my e-mails and just found a Hundred People Search new person I had not counted yet. So, this puts us at 93 now. Keep up the great outreach! 

Wednesday, July 16, 2014

If you need a lung transplant, why are you walking so much???

This is a question no one has actually asked me directly, but given a few comments, I think some of you are wondering.

I’ve been working really hard lately at walking as much as I possibly can. I’ve been posting the walks to my facebook page. The encouragement I have gotten from friends and family actually is pretty motivating.

I think some, however, wonder how it is I can walk three or more miles and need to move to get a lung transplant.

Let me clear that up for you! Grin!

For starters, I don’t need the lung transplant tomorrow. The issue is that my lung function has fallen enough that there isn’t as much “wiggle room” before advancement in my disease will cause me to need a lung transplant. As I’ve learned lately, moving is NOT EASY – especially when you haven’t done it in 12 years. Getting listed as a person with Hermansky-Pudlak Syndrome involves not just the many medical issues, but also lots of social support issues and services. If I were sicker, it would be harder to have the energy to move and to get established in my new location. Setting up all of those services etc. just takes time.

The other issue boils down to use it or lose it. I am really hoping that my disease stabilizes again for a few years, as it has done before. I can’t bet on it though. My doctors have told me the best thing I can do is exercise as much as I can so that if my lung disease progresses, I can do more with less, sort of speak.

Lastly, I have to lose weight before I can be listed, even if I needed the transplant tomorrow. I am working on that, but if it were easy I would have done it years ago.

It cracks me up that docs said to me, “You need to start trying to lose weight.” Really? That thought, as a woman in this culture, never occurred to me. I’ve never tried that. Great idea! Geesh.

The good news is my thyroid issues are good right now. My energy levels are better than they’ve been in a while (I’m thinking the change in medications as well as the oxygen.)

For quite a while I’ve been worried and puzzled by the fact that when I exercised, I never built up a tolerance for it. It never got easier as it is supposed to do. Now, I am seeing that I am building up some exercise tolerance. A walk that used to make me quite tired is now easy.

I am also tracking my calorie intake and burning quite carefully. I’m a big fan of the apps. MyFitnessPal and MapMyWalk. I think they should make me an advertisement! Grin!!! Well, I guess since I post it to facebook, I already am advertising for them. Grin!

Tuesday, July 15, 2014

Reader comments

Wow, I owe some of you an apology. For the longest time the only comments the blog had been getting were utter spam. Thus, I wasn’t really checking the comments. To my great surprise today when I went in to clean out the spam, I found some lovely comments from many of you.. Thanks so much for all the well wishes! I set the comments free and I’ll start looking more carefully.