Posts Tagged ‘Surgery’

Here I am over two weeks out of stem cell surgery after being so unsure for seemingly a very long time if I would make it all the way to the OR. I did and I’m so grateful! Yes, I still have ALS but I feel like a warrior that was slipped an extra weapon that my comrades don’t have access to. I don’t know how to express it really, it’s just something I wish we all had as an option right now. I can’t say with official data whether or not I’ll live longer, but I have this feeling I can’t shake. The only thing I know to compare it to is some type of survivor’s guilt. I ask myself a lot, “How did I end up with this opportunity so many want to be a part of? Others surely deserve it more than me.” The truth I know is we all deserve anything out there that has a chance against ALS. That includes me. I tell myself to stop feeling and thinking in such a way. I’m getting there.

I’ve had incredible support in this time from complete strangers, my entire family, friends, my study team and my ever-loving, always there, husband and caregiver. Grateful as I am and tough as I like to think I am, it has been painful. I’m improving daily though. The real tough pain is for the most part over as long as I don’t overdo it.

I went To Emory this past week to have the stitches removed. The last few days of having them in felt more like barbed wire in my head. It hurt during the day and itched like crazy at night. It feels so much better having them out. I can put a bit more into range of motion excercise without the tight skin feeling in the way now. From the beginning, I don’t know why and it’s not a concern now, I had less pain and faster range moving my head to the right, the left is now catching up. Moving my head up and down is coming along too. The most painful and frustrating is trying to move my body from the waist down and back up. That’s still a tough and painful movement. The frustration comes in, for example, dropping something on the floor from my chair. It’s a sight trying to pick it up. My old cane has come in handy but I do often have to give in and ask for help. The great news is that it’s becoming less painful with each passing day.

Like almost all of us, since diagnosis I started scouring the internet right away for any type of possible treatment available. I mean anything from something a person was trying on their own to the FDA approved studies be it medication or surgery. Stem cells have always been the top of my list as holding the most promise. Especially the particular stem cells and type of delivery into the body being used. Injection directly into spinal cord that Neuralstem has been working on and completed a phase 1 safety trial already. That has been my number one choice. Now, that is what I am able to be a part of in phase II. My main focus in life regarding ALS is doing everything My Doctor and whole study team tells me. After having the surgery, it is still my number one choice and I believe holds what we all need. I would take the risk again tomorrow without a hint of hesitation. I don’t have hard data to give. There is already great information out there for people to learn about it. I can give you my opinion, my personal belief. This is where it’s at in eventually getting to the long awaited treatment and dare I say cure. A lot of hard work and dedication has gone into this for years to get where it is. I believe It’s on an unstoppable  path to success. I hope for us all it reaches a level of available treatment soon as possible and just as quickly for spinal injury and other neuro-degenerative diseases.

We’ve seen some disappointing studies over last couple of years that seemed to have promise only to be suddenly dropped to the devastation of some patients saying they felt benefit. Heartbreaking. I still believe people who felt they were benefitting in any way should have had the option to continue. There are other trials going on that may hold some promise, even other stem cell options. So my intent is not to say to people I have the only thing out there worth being a part of. We need to keep trying all things and keep hope alive. Anything that gives any improvement or halts progresssion whatsoever is a great advancement for us. Hope, dedication and determination from pALS, researchers as well as proper timely approval from the FDA and we will get this. My little message that most of us are already living by. Hope and never ever giving up!

I could keep going about my serious feelings on this. I will have much more about my experience and opinions in future posts.

I want to get a little into the fact that I’m still a woman and right now I have a very unflattering haircut that I don’t expect to catch on. My hair is long (past shoulder length) in front and sides and I have a military buzz style in the back from surgery. It could possibly be referred to as some form of a backward type of mullet. No, that’s not what I want. So I’m trying to decide what to do about this little situation. With lots of thought I’m pretty sure I’m going to cut quite a bit of length off while having it shorter in back and the front framing my face. I’ve also become quiet a little hat person. I never was so much when younger. Now I feel they’re a great accessory and the right style even helps reduce the look of my fatter face. I may be wrong but believing it makes me feel better. This will also make my hair easier to care for. Something my husband helps with. Can’t go wrong there.

I see this has turned out quite long very fast so I think I’ll wrap it up. even though I have much more to say. Things about the study, My new medication routine and side effects it came with and just other ramblings about myself. Having had time to heal from the hardest part of recovery has me now feeling up to writing more. The surgery wasn’t the end of the study at all and that is my number one priority. I do hope to write weekly. It may be sometimes more or less. I will continue to give updates on the study that are my experiences and personal opinion.

I’ll end with saying I feel extremely positive about being in this study and what I believe it holds for our future..

Thanks for reading.

Until next time, take care,

April

I finally got the news I’ve been waiting for. All the months of testing, waiting and hoping that I’ve been posting about has resulted in a date set for stem cell surgery at the end of October.

Surgery for the Phase II, Open-label, Dose Escalation and Safety Study of Human Spinal Cord Derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis.

I’ll be having 4,000,000 stem cells injection directly into my spinal cord, 10 injections on each side totalling 20 injections. I’m experiencing many emotions about it. First I’m honored to have been chosen even though much of it was luck by being at the right stage of progression at the right time and living in the right place. I was still chosen and I take it very serious. I know this trial is being watched very closely and being healthy as possible for surgery and recovery is important to show this is worthy to continue for more people, hopefully sooner. While there will be observations for improvement or slowing of progression, this is still considered a safety trial. Although I have already started eating healthier, I’m definitely kicking that up a notch and doing everything possible to be physically and emotionally prepared for this surgery.

It’s my feeling that participating in this study is not only for me but for everyone living with ALS and those who love them. This is huge for ALS and also for other neurodegenerative diseases such as Parkinson’s and Alzheimer’s disease. A lot will be learned. That’s why I want everyone to know how serious I’m taking this. I want and need to do well for the advancement of treatment for us all. In saying that, I also want to say I can’t predict what will happen in the big picture or when. From all the reading I can get my hands on about this and my personal thoughts, I think this is making much progress in understanding ALS and even if I get no measurable benefit from it, I still believe it’s a huge advancement of learning for researchers and will move treatments forward much faster.

After saying all this, I have to admit to having moments of fear. Thankfully I’m able to express that and keep my mind in a good place. I’ve spent the last few months being tested to make sure I meet the strict criteria and that’s where my thoughts have been. Now that the surgery is actually scheduled, that is where my complete focus is.  There is no doubt huge risks are involved, including my lifelong fear of being instantly paralyzed from the neck down. While knowing these risks, I’m not in the least  deterred. During the procedure I know I will be under the care of what I believe to be the most skilled hands and brilliant minds in ALS research and that care will continue throughout my recovery. This helps keep my fears at bay. Recovery will be far from a cake walk but, I am prepared to take it on.

I want to say to the ALS/MND community as a whole that you can count on me to do everything expected and recommended by the doctors treating me and I’m dedicated to being in the best condition for it. I know many would love to participate in this study. Since it’s so limited at this time, I hope that will bring some comfort to know I’m not just glad to be a participant, I am dedicated and preparing for it. I know that would make me feel better.

Let’s keep hope alive that this and other studies going on will give us a treatment soon. For us as well as people living with other neurodegenerative diseases. Hope is alive and well in me for future treatment.

I have been nervous about this blog post since I received the news. After writing it I feel better and believe I will have the support of the ALS/MND community behind me. I still have a life to live until surgery and for the most part my life will continue as normal.  There are plans to be made for pets and family coming from long distance. Other than that, I’ll be listening to my music, watching movies, loving my pets and being me as each day passes.

Thank you very much for taking the time to read my blog.

Until next time, take care,

April

What a day yesterday was!

This has been the hardest blog post for me get going with. I’m just going to start right off with why. I am officially in the ALS phase II stem cell study at Emory. Even though I’m officially in the study, Dr. Glass made very sure I am aware that between now and the surgery date, which has yet to be set, I must continue to meet all of the very strict criteria, I can still be dismissed from the trial as late as the day of surgery. I was also reminded and made very aware of how dangerous this can be. Messing in any way with the spinal cord is in no way to be taken lightly.

I’ve never felt quite like this in my life. I feel frightened and elated at the same time. I also feel a strange sense of guilt. I know many people want to be in this trial. I try to remind myself I didn’t win a trip to the moon. I was given an opportunity to help move research along at great risk to my health and even possibly my life. Knowing so many others would gladly do the same is still what gets me. It’s still the day after and I am still coming back into myself.

I am going to stay focused  on keeping myself in the best health I can be. I will take care of my body, follow every order or even suggestion given to me by Dr. Glass and the study team regarding this. If not I don’t think I would be deserving of it. I’m doing this for all of us and for all who have lost their lives to ALS. I’m taking this very serious.

Please don’t get me wrong. I’m not trying to come off as I’m not harboring a small light of hope that I will get some sort of benefit from this particular surgery. I wouldn’t dare insult your intelligence in that way. However, this is still a safety trial. I am taking a huge risk.

Anyone who really knows me can tell you through my life I’ve always said my biggest fear is to be paralyzed. So being diagnosed with ALS was like my worst nightmare coming true slowly. I’ve tried finding comfort in knowing it doesn’t affect sensory, but as we all know, that is a double-edged sword.

I will be taking care of myself but I’m still going to be myself. I still have other things I will continue focusing on. All this will continue as usual. To be honest I’m telling this to myself just as much as you, my readers, right now. I also know it’s true. I’ll continue blogging, preparing the “show” I’ve been working on for my family, my documentary and every other project I have going on. It’s been keeping me going since my diagnosis.

Yes, with it being so new, I’m adjusting. I know me and within a couple of days this will be something else I’m participating in for the purpose of ALS. More in the forefront of my thoughts at times because of all that comes with it, but another study nonetheless. There is nothing any of us do that is too small for this war we’re in with ALS. Everything counts.

I will keep you up on my feelings but I won’t be blogging specifics of the study after surgery. I’m not the only person in it, I’m not in charge or aware of exact outcomes so therefore It’s not my place to share what I don’t know. My blog is still about me and how I’m dealing with ALS, that’s what I’ll continue to share with you.

As I said, I’m still taking this all in. I hope I’ve explained myself well about how I’m feeling right now. I’m not a professional writer. I do love to write and I’ve found a great outlet in blogging.

I also said I’m still me, this is another day in my life. I’m about ready to have dinner with Tony. I’ll watch my favorite show, Big Brother, then I’ll surely have to rock out to some Rolling Stones!

please visit my website: http://thealsexpress.com

Until next time, take care,

April