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I know, I know… it’s been a while. I actually have A LOT of catching up to do. It’s been very busy (both good and bad) lately, so expect a lengthy blog (would you expect anything else from me??) soon!! First of all, pardon all the dust and construction (cough cough), but as many of you know, I have started my own business building affordable websites and social media marketing for small businesses… I’m grateful that prior to my site being built, I’ve had referrals and have a few customers… so it’s the story of the cobbler’s shoes… my website needs some work, LOL. But my blog will remain on this site… the goal of my business is not only to help small businesses get online and market their business affordably… but also to continue raising awareness about Alpha-1. 5% of my profit each year will be presented to the Alpha-1 Foundation at the annual conference so they can continue their efforts in finding a cure.
I have had so many people ask me about the beef organs I started taking a while back, so I wanted to give an update.
As many of you know, one of the worst effects I am dealing with after my infusions is the fatigue. I already suffer from fatigue so the added side effect has been very unwelcome… so much so that I rarely drive anywhere for a couple days post-infusion. After reading about the benefits of beef liver, and that it contained somewhat of an “anti-fatigue” factor, I was ready to give it a try. I’m happy to say that well over a month later, and I’ve yet to have liver burps (thank goodness!!!!!). I am SO grateful to Brian, the owner at Ancestral Supplements, for being such a big help in putting together a supplement plan for me. Their website is a goldmine of information (some of which you can find below, but I encourage you to visit their website www.ancestralsupplements.com). I did quite a bit of research and landed on this company for many reasons… but the number 1 reason other than quality products, was customer service. Not often will the owner of a company quickly answer emails… this one does. Sometimes you notice that they are out of certain products… which is actually another reason I chose them, small batch… to me, I would rather wait a little while than have a product like this mass produced, sitting on shelves for God knows how long, etc.
But all that aside, does it work? I can tell you that for me personally, while the change was gradual, taking the organs has helped me. I didn’t realize just how much until I had gone out of town, expecting only to be gone for about 4 days, I ran out of capsules. I could feel that shift in energy… Other things that I’ve noticed: my blood pressure, which we have tried to control for years with a combo of 2 meds, is finally more than normal!! This was a biggie for me!! I’ve noticed less inflammation, better sleep, more clear headed, stable blood sugar, improved digestion, stronger nails, clearer skin and just a better overall feeling of improved health. Another thing I noticed is my immunity seems to be improved. Anyone that knows me, knows that if someone so much as sneezes near me, I’m the one that ends up with pneumonia, LOL. After over a week of spending time with my Grandfather in the hospital, around so many sick people, weather changing, etc. I’ve remained in good health. A few times I have felt like a cold or something was coming on, but so far, so good! Oh yeah, and after SO long of working so hard to have the scales NOT move, they are finally moving in the right direction… I really think this is because of the reduced inflammation. So those are HUGE bonus points!!!! I really do feel quite a bit of change… and thankfully, I’m no longer scared to burp! I have spleen and pancreas to try, and will be trying others… I will keep everyone posted on the results. Throughout my research, organ meats continue to come up as a natural way to help cure a lot that ails us, especially Americans. I was very skeptical, as you guys may remember from my original blog post but I do feel that I’m taking the best quality option out there and I 100% trust Ancestral Supplements (so much so that I’m working on getting their products in my local pharmacy that focuses on homeopathic/natural treatments). The idea of being able to go off a good deal of my meds is starting to become a possibility!!! So yes, pass the liver please!!!! 🙂
Read more about the benefits below. Information is from Ancestral Supplements. You can read more about this amazing company at www.ancestralsupplements.com
Benefits of Eating Liver
Most of us know that liver is good for you but do you know why, and if so, why aren’t you eating it? Grass-fed and grass-finished liver from pasture-raised cows is among the most nutritionally dense foods in existence. This type of high quality liver is loaded with vitamins, minerals, proteins and healthy fats that support collagen synthesis (think skin, hair and connective tissues), immune health, and heart, brain and liver health.* Our early ancestors knew this, which is why their traditional diets included the frequent and nourishing consumption of this nutritional powerhouse. If you can’t stomach the taste of liver, you can easily throw a few capsules down the hatch without incident — beef liver capsules are virtually tasteless. If you’re looking into a high quality desiccated liver supplement, see below so that you know what to look for.
GRASSFED BEEF LIVER IS HIGH IN…
- Preformed Vitamin A (aka retinol)
- Vitamin B12
- Bio-Available Iron
- Hyaluronic Acid
[ FACT: Liver contains a source of iron bound to hemoglobin (heme iron) of which up to 33% is absorbed compared to non-heme iron which can have as little as 2% absorption. If you’re looking to increase your iron intake, look no further than our Spleen product… it has 5 X’s the iron! ]
GRASSFED BEEF LIVER SUPPORTS…
- Healthy Teeth, Gums, Skin & Hair *
- Healthy Joints, Ligaments & Tendons *
- Collagen Production *
- Energy Metabolism *
- Immune Function *
- Methylation *
- Heart, Brain & Liver Health *
[ FACT: In addition to these benefits, high quality beef liver provides all the fat soluble vitamins (A, D, K & E) in highly usable forms, and provides meaningful amounts of folate, copper, zinc, chromium and hyaluronic acid. ]
BENEFITS OF EATING ORGANS (LIVER, HEART, KIDNEY, PANCREAS & SPLEEN)
Traditional peoples, Native Americans and early ancestral healers knew that eating the organs from a healthy animal would strengthen and support the health of the corresponding organ of the individual. For instance, the traditional way of treating a person with a weak heart was to feed the person the heart of a healthy animal. Similarly, eating the kidneys of a healthy animal was believed to support urinary ailments and overall kidney health… Pancreas was fed to people with digestive problems… and spleen was fed to people with immune and blood deficiencies.
Organs were a staple of our early ancestors’ diets as the ultimate superfood, for good reason. It turns out, this nourishing tradition is backed by science… “Radioisotope labeling studies in animals have shown conclusively that, when eaten, organs and glands selectively travel to the corresponding organs and glands in high concentrations. This research, done at the University of Scotland in Edinburgh, lends credence to the ancient practice of eating animal organs to help ensure health in one’s corresponding organs…” – Dr. Ron Schmid, ND
Our early ancestors knew this, which is why their traditional diets included the frequent and nourishing consumption of nose-to-tail organs.
BEEF ORGANS (LIVER, HEART, KIDNEY, PANCREAS, SPLEEN) ARE HIGH IN…
- Preformed Vitamin A (aka retinol)
- Vitamin B12
- Coenzyme Q10 (also known as CoQ10)
- Bio-Available Heme Iron
FACT: The pancreatin in one serving provides approximately 125,000 NF units of amylase, 115,000 of protease, and 20,000 of lipase.
BEEF ORGANS (LIVER, HEART, KIDNEY, PANCREAS, SPLEEN) SUPPORT…
- Liver, Heart, Kidney, Pancreas & Spleen Health *
- Detoxification Pathways *
- Cardiovascular & Mitochondrial Health *
- Immune Health *
- Collagen Health *
- Regulates Energy Metabolism *
- Enzymes For Digestive Health *
- Overall Health & Wellbeing *
FACT: In addition to these benefits, high quality beef organs provide all the fat soluble vitamins (A, D, K & E) in highly usable forms, and provides meaningful amounts of folate, copper, zinc, chromium and hyaluronic acid.
Benefits of Bone Marrow
Traditional peoples, Native Americans and early ancestral healers believed that eating the organs from a healthy animal would strengthen and support the health of the corresponding organ of the individual. For instance, the traditional way of treating a person with a weak heart was to feed the person the heart of a healthy animal. Similarly, eating the kidneys of a healthy animal was believed to support urinary ailments and overall kidney health… Pancreas was fed to people with digestive problems… and spleen was fed to people with immune and blood deficiencies.* Bone, marrow and cartilage was no different.
Weston Price DDS, Author of Nutrition and Physical Degeneration, studied the dietary habits of traditional peoples across the globe. He found that the natives of Canada put great stock in consuming animal organ meats, especially bone marrow. He reported:
“Indians putting great emphasis upon the eating of the organs of the animals, including the wall of parts of the digestive tract. Much of the muscle meat of the animals was fed to the dogs. It is important that skeletons are rarely found where large game animals have been slaughtered by the Indians of the North. The skeletal remains are found as piles of finely broken bone chips or splinters that have been cracked up to obtain as much as possible of the marrow and nutritive qualities of the bones. These Indians obtain their fat-soluble vitamins and also most of their minerals from the organs of the animals. An important part of the nutrition of the children consisted in various preparations of bone marrow, both as a substitute for milk and as a special dietary ration.” 
Organ meats and bone marrow were a staple of our early ancestors’ diets as the ultimate superfood, for good reason. It turns out, this nourishing tradition is backed by science… “Radioisotope labeling studies in animals have shown conclusively that, when eaten, organs and glands selectively travel to the corresponding organs and glands in high concentrations. This research, done at the University of Scotland in Edinburgh, lends credence to the ancient practice of eating animal organs to help ensure health in one’s corresponding organs…” – Dr. Ron Schmid, ND.* Our early ancestors knew this, which is why their traditional diets included the frequent and nourishing consumption of nose-to-tail organs meats.
WHOLE BONE EXTRACT CONTAINS…
- Bone Matrix, Bone Marrow And Cartilage *
- Nutrients Exclusively Found And Expressed In Whole Bone Extract *
- High Concentrations Of Stem Cells And Base Cells *
- Collagen, Growth Factors And Fat Soluble Activators *
- Glycosaminoglycans Naturally Present in Bone Matrix *
NOTE: There are two types of bone marrow: red marrow (also known as myeloid tissue) and yellow marrow. Red blood cells, platelets and most white blood cells arise in red marrow; some white blood cells develop in yellow marrow.*
WHOLE BONE EXTRACT SUPPORTS…
- Bone Health (think bones, marrow and teeth)… Based On “Like Supports Like” *
- Connective Tissue Health (think ligaments, tendons, cartilage, skin)…Based On “Like Supports Like” *
- Dental Health And Immune Health *
- Supports And Repairs Cellular Damage *
NOTE: There are a number of caves that show long evidence of human habitation, going all the way back to the Paleolithic period. All of these caves contained ancient fire pits. And all of these caves contained the remnants of large piles of bones. The bones that were found were animal bones. Almost without exception, they had been cracked open, and every trace of the marrow removed.*
Okay, so it’s 6:30pm on 9/24… as you will note below, I’m really crappy at this whole “blogging” thing, lol. Another post 2 weeks in the making. I wonder if I will click the “publish” button tonight? Your guess is as good as mine!!!!!
**ACK! I hope that I’m FINALLY going to post this tonight! Which is almost a week after I first started!!!! I apologize… it’s very hard to share your vulnerabilities with the world… even if it might be only 2 people, this has all been very scary to open up about… to be honest about… and to truly learn the meaning of humility… so, I’m writing this top paragraph at 11:15pm on 9/22. Which, if you have paid attention to my major side effects, will make you understand why I’m so excited!! I’M AWAKE!!!!!!!”
(Original post… from back in the day, which happened to be last Sunday!) Hey ya’ll! Happy Sunday! I know you have been hanging on by a thread to see if I survived the dreaded beef liver capsules I wrote about last time. Today marks a week that I’ve been taking them (and now, it’s been TWO weeks!!). I have never in my life been so scared to burp, EVER. Did you know that was actually a real thing? Yup, Eructophobia… and I can’t say I don’t still have it (oh yeah, still have it after 2 weeks too). I take 2 in the morning and 2 at lunch and still to this day, even though I actually have burped with no devastating consequences, that fear is still there. The brand I am taking is from Vital Proteins, which is a company I trust. I have found a brand that is less expensive, and the reviews state that there is also no aftertaste, but I can’t say I’m excited to try… just one failure and I don’t think I would ever take another. I’ve actually written to the other manufacturer, where the owner is very active with answering questions and giving feedback, to see if he will send me a small sample. As for the results? It’s too early to say… from my research, those that have a more extreme fatigue syndrome, liver damage, etc. may have to increase the dosage, or take more time to see results. So for now, we wait… UPDATE: 9/24 I had my infusion. I didn’t go straight to sleep when I got home and was not completely exhausted. And while I did sleep until nearly noon Saturday, I got up and drove to Wake Forest for Grayson’s soccer game. This is HUGE for me, as Saturday’s I’m usually down for the count. Could it be the liver? It’s the only thing I’ve really changed, but we will see. And I DID hear back from the owner of the other brand of beef liver (they offer other organ meats as well, which I *gulp* inquired about as well. He is going to send out some things to me, so I’ll let you know. This company is Ancestral Supplements… if anyone has any feedback on them, please let me know.
Did you think THAT was the good news? HA! That would have been pretty funny! “Great news everyone, I didn’t vomit after taking my liver pills!!!”. Although I guess now that I “say” that, it really IS good news, for me at least. So I guess I’ll just wrap this up…
But WAIT, there’s MORE!!
I had my lung function testing this week. The goal is for my Prolastin infusions to slow down or stop the destruction on my lungs. But MY lung function has actually IMPROVED!!! Yup, improved… miraculous!!! Now, my doctor, Donnie Downer (just kidding, I love him!!) warned me of a few things. I had to reschedule my appt from the morning to the afternoon, so I had received 2 nebulizer treatments as well as 2 of my inhalers and used my rescue inhaler due to the heat. So he cautioned that the number wasn’t set in stone, which is why we do this every 6 months, but as far as I’m concerned, seeing the number go up rather than down, is a victory!! I really needed it. After the liver biopsy, and dealing with insurance issues, job searching, weekly infusions and a house that is just in shambles… I needed a W. I feel like God knew I needed that. There was just too much coming at me too quickly, insecurity, uncertainty, fear, worry… I needed a win. Praise be (sorry, just finished binging The Handmaid’s Tale).
On top of that, I received the kindest gift from one of my besties, SSMS Amy Dren. Her Young Living Essential Oils group, “Team on Call” does a monthly thing called “Team on Call Gives Back” where they pick a nominee and other distributors pitch in to supply a kit of oils & diffuser for their nominee. My sweet Amy nominated me as someone that oils could be really helpful for and she shared my story… and they picked ME!!! This was such an honor and I’m so grateful to Amy for doing this… there is a long waiting list and right now they are doing it for hurricane victims… so the fact they did this for me is truly overwhelming. I have been using them for about a week now, but Amy warned me to start slow… I received that message just before dumping all the bottles all over my body and rolling around in it, praise be (sorry, it’s an addicting show). So I am learning all I can and confident that this has potential to help me not only with the chronic fatigue, but my liver and lung disease, my urticaria… anxiety, etc. I am so grateful to Amy and her group for providing me such a special gift… I’m looking forward to becoming an oily granola crunchy kinda girl!!!
So, this is my 9/22 update… a week after I should have posted the original blog post (LMAO, I crack myself up… the 9/24 update will be below). So many things are happening these days… not working is driving me crazy. Finances are always looming over my head. I’m still waiting to hear from the National Organization of Rare Disorders to see if they will help with my ridiculous health insurance premiums… And I really empathize with the many others before me and those going through it now, it can start to consume my life. I am forever grateful to those that have donated to the fundraiser Karen setup. While I was embarrassed and very humbled in the beginning, it really has been a great help. When everything starts falling apart in your life, you quickly realize that you are truly never alone… who is there to reach out with a helping hand, silent prayers or a listening ear. There is simply NO POSSIBLE way to thank those that have shown you such immense kindness when you are at your weakest. I can’t tell you how much that means to me, and believe me… if I figure out a way, that WILL happen!!!!
Truth be told, this last month has been one of my toughest. Getting the liver biopsy results was certainly not a breeze… not working, trying to plan my next moves, etc… so much has weighed so heavy. The infusions feel like they are getting closer and closer together… Friday comes and I think “didn’t I JUST do this?”… and I guess the answer is, yes… but the last 2 weeks, I just haven’t wanted to go. But I get there and my girls always make me smile, I absolutely adore my Duke family, they make going in every week so much easier. And I know that 3 months from now, 3 years from now, 10 years from now and many times in between, I will have the same feeling from time to time, but I have to remind myself… I am blessed that there is something that helps to slow down the progression of the lung portion of this disease, so I am blessed as there are many that aren’t so lucky. So for them, I keep going, and complain far less.
I think I finally have my next move down as far as working goes… It seems the people that I have built websites for in the past, are pretty happy… I always believed that helping small businesses develop their online presence should be affordable. I can’t even believe how much we spent over the course of 20+ years developing ours, and looking back, we never had total control of those sites… a lot of wasted money over the years. So I’m going to continue building affordable sites for small businesses as well as help build their online presence and social media. I already have a few customers, so please say a prayer or send some good juju my way that this will eventually be enough to sustain me financially, especially healthcare. I’m excited and terrified at the same time. So, if you know of any small businesses that need some website, SEO, social media help… send them my way!!!
My next focus is to start trying to get my townhouse ready to put on the market. This will serve me well in so many ways… the equity I have in the house will help while I get back on my feet… I can get a house with a yard for my girls since walking 2 crazy dogs when you have severe lung disease, is beyond challenging… but they need and deserve to run and play and have fun. And preferably, I’ll be able to get a 1 story ranch home so that if the time comes when stairs are more difficult, I won’t have that to worry with. It’s truly overwhelming just how much needs to be done around here though… So much damage from when the girls were pups (who knew just how destructive 2 lab puppies could be? Well, truth be told… I did, but just knew they would be different. Spoiler alert, they weren’t).
So the latest update (9/24, who know if that will be the date anyone actually sees this), I’ve had a little struggle this weekend. I’m not sure if it’s from being in the heat yesterday or what, but my oxygen sats have dropped… I’ve had them drop before… after procedures, once during an infusion, and I’m sure many times that I was unaware of. This time, they aren’t coming back up. So since the afternoon of 9/23 until the evening of 9/24 (can you tell I have little faith that I’m going to hit publish on this tonight? lol), my sats have been lower than usual. I can usually do the breathing techniques and bring them up pretty quick… but not this time. Yesterday it was staying around 92%, and dipping down to 90%. Today it’s more along the lines of 94/95%, but still dipping to 89-91%. So I’ll be putting a call in tomorrow morning. The fact that it’s not coming back up makes me fear what I haven’t wanted to face… that I may not be far from having to use supplemental oxygen. I’m hopeful things will turn around and come back up for good, very soon.
And something that bugs the crap out of me because I just saw it. Publix, I hate you. I’m glad you aren’t close to my house. Grocery store commercials shouldn’t be tearjerkers… that actually should be a law. I don’t need to cry at commercials for groceries. It’s like those commercials companies do during the Olympics… nobody needs to cry during a commercial for freaking laundry detergent. Save the tear jerkers for Sara McLaughlin and SPCA commercials. Sheesh.
I might be wrapping this up… wow. Could I actually publish this tonight?
Oh yeah… my sister and her hubby celebrate 18 years of marriage tomorrow! Happy Anniversary Karen and Anthony!!!!!!
Under his eye… (damn you Handmaid’s Tale!!!!!!!!)
Infusion count- 33
It’s been a long time, so I apologize because I know that several have contacted me about my biopsy results. SO much has happened in the last couple of months, and I’ve literally been writing this post since August 3rd (as you can tell by the length LOL). The last thing I want to do is become a walking blogging pity party… but some days, the truth is, that’s what I am. I think we ALL have those days. Again, I try to make them less frequent. So when we last left, my port was in but had not been used yet. The following week, my sister decided to go with me… so she picked up lunch and I was excited about being able to have my port used for the first time. That’s when things went bad… really bad. I still had a tremendous amount of swelling and soreness, but the nurse said it would be fine. My sister was taking a video of how it was done just so I could see it later. From the start, I knew it was a bad idea, the pain was horrendous. They went and got another nurse, a nurse that will never touch me again I’ll add, and she pushed, and tugged and stuck me several times. I was in tears from the pain… I looked up at my sister who was also crying, and one of the nurses had tears in her eyes. I guess they didn’t hear me say “STOP” the several times I did but finally my sister got them to stop. I will take 20 missed IV sticks over that, any day of the week. It was a bad day. I hated that Karen had to see me go through that because I could see how horrified she was… but I was also very grateful that she had come with me that day.
After that day, port access has been great. With the exception of a couple of weeks when the port had shifted slightly, but it seems to have settled back into it’s “pocket”. It’s night and day… I certainly don’t regret getting the port. I’m glad that is behind me, infusions are really a breeze now.
To date, I’ve had 30 infusions… and they continue to get easier, with the exception of the extreme fatigue. Although I have had a couple of weekends when post-infusion fog didn’t keep me glued to the bed all weekend, so I’m grateful for those days and hope there are many more to come. The people I get to interact with at Duke Raleigh Cancer Center every Friday are the reason I look forward to Fridays. From the front desk staff (particularly Shaunda, we cut up and laugh), to the assistant Jazmin (who is always smiling, laughing and treats every patient like they are the only one she has), to all my amazing infusion nurses, Debbie my check-out girl, the LPN that oversees everything… these ladies are exceptional and make the idea of having these infusions for the rest of my life so much more bearable. I had an incident several weeks ago where my oxygen saturation took a dip, my pulse and blood pressure went up quite high and within seconds, it seems like almost all of those people were surrounding me, giving me oxygen, shutting off the infusion, checking everything possible. In the midst of a scary time, I’ve never felt safer. Generally when I have these issues, I’m alone or around family/friends who don’t understand how I’m feeling so they feel helpless. This also helped determine what causes most of these events that I have, my O2 sats… so anytime I start having that feeling where the elephant is on my chest and I can’t breathe, I check my oxygen and start doing my breathing techniques. It’s easier to get through these episodes now that I know it’s my lung disease causing it… for years I thought I was crazy and just severely anxiety ridden. For now, I don’t think I’m ready for supplemental oxygen and will hold off as long as I can on that.
Okay, so I had my liver biopsy on July 13th. My mom took me and all in all it wasn’t a bad experience. Any type of biopsy is never a walk in the park, but my fear of this one was paralyzing, especially knowing I was going to be wide awake and having a big needle stuck into my liver… it just gave me the heebie jeebies. My sweet mom held my hand… they gave me Fentanyl and Versed, as well as lidocaine shots to numb the area. They ended up not getting enough tissue in the first biopsy so they had to go back in for another… that wasn’t fun, but I survived. Afterwards, you lay on your back or your side in order to stop any associated bleeding… then they send you home. That’s it. Come back on 8/2 for the results. There are times when 2 weeks seems like an eternity. This was one of those times (you can skip down below to see the results if your eyes are starting to get tired at this point, LOL). And for those interested, this is what a liver biopsy looks like!
During that time, I also became technically out of work (well, not technically… really, out of work). This presented a problem and some panic about health insurance. My current insurance is $902.79… I don’t even get a free dinner with that, LOL. Since our insurance runs 4/1-3/31, and my infusions bill at $20K per week, I met my out of pocket maximum the first week of April, and still paying on that. I could switch over to the ACA, as I do qualify, but that would mean going through the approval process again for my treatments, as well as meeting another out of pocket maximum of $7500 only to have to turn around and do it AGAIN January 1st. That’s just far too much out of pocket in a 9 month period of time. So my goal was to try and keep my existing insurance until January (or preferably April). Thankfully, the Alpha-1 Foundation does have resources for financial assistance… this is through different organizations that will pay a portion of your insurance premium in order to relieve some of the burden. I have applied for some help, and hopefully will get an answer soon! Any prayers would be greatly appreciated… I literally and physically cannot afford to be uninsured. I will say, insurance is the most giant pain in the ass EVER. When you have a chronic illness (especially when it’s an extremely expensive chronic illness), insurance issues can definitely keep you up at night.
It’s also hard to look for work when you have a chronic illness… there are of course many jobs that get crossed off the list immediately but then finding that perfect company that is comfortable with you having to take off half a day a week every week, plus a couple months out of the year, taking off several hours per week for pulmonary rehab… not to mention all the doctors appointments. Ideally, I’d like to continue working with small businesses building websites, social media, SEO, etc. I just finished up another website and Facebook page for a great friend of mine, Billy Stougaard and his business, check them out! Carolina Furniture Installations Website and CFI Facebook Page . And if you know of a small business that is looking for an affordable website, send them my way… I have other sites I’ve done as well, perhaps I’ll add a portfolio here at some point. Ultimately, I’d love to work for Alphanet as a coordinator, helping other Alpha’s… my coordinator Gayle has been such a huge help for me navigating these awkward waters, and I would love to be able to pay that forward… they have my resume, fingers crossed.
Okay, biopsy results. Going into this, we knew that my liver was somewhat affected based on a few things… elevated liver enzymes for the last few years, non-alcoholic fatty liver disease (NAFLD) and a few other issues. So the biopsy showed that this has progressed to NASH disease (Non-Alcoholic Steato-Hepatitis). I also have stage 2 (of 4) liver fibrosis. So, this means of course more lifestyle changes, as the NASH disease is reversible… I will see the liver specialist every 6 months and will have frequent biopsies or fibroscans (hopefully more of the latter). If anyone understands medical speak, it’s all greek to me, lol.
Four cores of liver are present measuring 32 mm in aggregate length and 12 portal triads
are seen. Approximately 90% (severe) of the hepatocytes are involved by macrovesicular steatosis, both large and small droplet forms. The fat is seen in a azonal distribution. There are many ballooned hepatocytes. No definitive Mallory-Denk bodies are identified. There are patchy, minimal foci of lobular inflammation identified; less than 2 foci are seen per 20x objective field. Rare acidophil bodies are identified. The portal triads show minimal chronic inflammation. No interface necrosis is identified. Interlobular bile ducts and portal vessels are within normal limits. Trichrome stain shows mild centrilobular pericellular fibrosis as well as periportal pericellular fibrosis (stage 2 of 4). Iron stain is negative. Reticulin stain shows minimal patchy hepatic plate disarray and loss around steatotic hepatocytes.
So, that’s where we are today. Hard to believe I already have my next pulmonary function testing next week… so hopefully that will bring positive news that my lung function hasn’t further decreased!!
I ordered beef liver capsules today (insert vomiting emoji here), after doing some research that liver is very good for your liver (who’da thunk it?), and liver also has an “anti-fatigue factor” that people rave about… so while I’m not looking forward to the aroma or taste, I will do what I can to try and get some of my life back and feel somewhat human again. It’s been a tough year… but I still wake up every day and count my many blessings. Some of those very blessings are probably reading this right now. You know who you are, and I’m grateful for all of you. I’m sorry this has been so long, and I will try to update more frequently in the future. But as you can see, the last few months have kept me rather busy.
If you made it this far, thank you… and bless your heart!!! LOL!! Until next time!
So, it’s been a while, and this post is LONG…you’ve been warned!! 🙂 There has been a lot going on the last couple of months that are going to change the course of my life in many ways. Things I’m not really prepared to talk about right now, but eventually I’m sure I will dump it all out here… but for now, just know that I’m doing what I can for my health while trying to juggle many balls. Also, I’ve updated on Facebook but the rest of my family has been tested. So my sister is MS as is my mom (M is normal, S is the bad allele). My father is an MZ (Z is the worst allele). So, my sister and mom will want to at least get into the pulmonologist to get their lung function testing, and include that in their routine maintenance as well as liver function testing, just to be safe. As for my dad, more and more is coming out that MZ patients can be just as sick as SZ and ZZ patients, so thankfully dad is under the care of a Pulmonologist who is in the same practice as mine. He will need to be monitored more closely so if his lung function starts to drop further or liver function deteriorates, he can get quick intervention. I’ve sent information to our blood relatives to get tested, considering this is 100% genetic and we know my Dad’s side carries the Z gene and Mom’s carries the S… but I haven’t heard back from anyone. I hope that other family members are okay and not affected by this disease.
So last Thursday, I got my Port-a-Cath. Specifically it’s a Bard Power Port… not even sure what that means or what the differences are, but I just like saying “Power Port”, haha. And no, there will be no “main veining” tequila shots people!!!! The port had quickly become a necessity. Originally when I started infusions (only on 2/8/17), my veins were good. I honestly thought I had at least a year before I would start having problems. My hands are out due to multiple surgeries. My right wrist doesn’t do well due to the broken bone that never set correctly… my forearm veins have become very small and like to roll. Apparently, in the heat, your veins tend to shrink up a bit, and (only based on the papers I got on release from one of my infusions), I’m dealing with some anemia. My infusions were becoming painful. There was one nurse that every time she got me, she just started having one of the head nurses start the IV. 2-3 pokes every week was leaving my arms tired and my spirit a little low. I didn’t want to start dreading each Friday so soon into my treatment. Since this is a lifetime of therapy at this point, my nurses and doctors all agreed that getting the port now would save me down the road. And as you can see from the trouble I had just getting the IV so I could have the surgery for the port, it was not done too soon!!! The irony that this happened before getting my port implanted in order to keep THIS from happening, LOL.
Tomorrow will be a week and I still have people ask what happened. It actually looks worse than where they implanted the port.
So, the port surgery. I admit, I was very apprehensive. When you have a breathing disorder, blood pressure issues and anxiety, the thought of ANY type of anesthesia is scary. I’ve had trouble in the past with it, and due to the number and types of medication I’m on, it’s always a concern. If there are people that read this blog and remember my very first post, you will know what I did in order to TOTALLY screw myself. Yup… Google. Stupid effing Google. I just googled port placement pain… I ended up on a breast cancer site where most of the women on there were saying the port surgery was worse than their mastectomy! I was horrified. I cannot even imagine the pain of the mastectomy although I have had many of my hero friends go through it… not one ever said the port surgery was worse… but those comments stayed in the back of my head. Then after doing the entire not eating/drinking thing, I was heading to my parents to drop the dogs off since I planned to stay there at least Thursday night so they could help with the dogs, and just in case I needed any help. Anyhow, I got called 45 minutes before I was supposed to arrive at pre-op to ask me if they could push me back to Friday. This was a tough one for me… I had already spent 24 hours mentally preparing myself and felt like I was really in a good place and ready for this surgery. Pushing it back would mean going through that again. It also meant going straight from surgery to my infusion to sit for a couple hours, having no idea how I was going to feel after surgery. I told them that if it was my only option, I would do it, but would really rather not. I told her that I could extend the not eating/drinking thing if I could just come in later… that seemed to work for everyone… so I was to get there at 11:30, surgery at 1PM. No problem, we got this. So we get there and I get back to the cardiac cath lab where they do the procedures and find out there are 3 people ahead of me, so it’s going to be a while. Meanwhile, let’s get the IV started… you see in the pics above how that went. She drew several vials of blood from the first spot but realized she was getting clots and that IV had to be removed and placed elsewhere, and the blood was also no good (YAY! We’re off to a great start here!!!!). So, started over again, got the bloodwork done… mainly for them to find my clotting times and also assure I wasn’t pregnant… I tried to tell them that it would mean baby Jesus had a brother or sister if that was the case, but they weren’t taking my word for it. And with bad veins, to get the blood, she was squeezing and pumping on my arm. GOOD times!! The nurses were fabulous… and then the surgeon came in… Dr. Pugh (who is not the Dr. Pugh that works with my pulmonologist, but again, Dr. Pugh’s are usually pretty good… except the OTHER Dr. Pugh totally missed the rapid decline in my lung function, but I wasn’t holding that against THIS Dr. Pugh 🙂 … anyway, he came in and we started chatting (my mom was with us). He was AWESOME! Talk about someone that completely calmed your nerves… he stayed in there for what seemed like forever… we talked about dogs, life, etc. Just such a calming bedside manner… If you are in the Duke system and have the choice of a general surgeon, I HIGHLY recommend Dr. Vernon Pugh! Who also works with the surgeon that saved my dad’s life, Dr. Christopher Watters… either one you can’t go wrong with…. anyway, next thing we knew, the surgical nurses came in and said they opened up another room and it was time for me to go!! So they roll me in and introduce me to the Interventional Radiologist, Derrick, who would be assisting Dr. Pugh since they use guided imagery (based on the thing that kept going back and forth over me… how do I know this? I WAS AWAKE!!! The ENTIRE time!!! Back to that in a minute). My blood pressure was 166/106 when they rolled me in. They they put the sheet over my head, which a little piece of plastic I could look out of, but couldn’t see anything… they started prepping the area, which included taping my breast down… again, could we have MORE fun today??? LOL! BP rose to 194/118, so they were slowly placing “medicine” in my IV so they could try to reduce my BP prior to starting surgery. I think I finally got to 163/102 (and I had taken both my BP meds the night before, plus a xanax once they got the IV in). They ran the antibiotics and they were ready to start surgery. The anesthesiologist said “okay, going to give you some medicine now”, and I waited for that nice slow journey into LALA land. No such luck. Between my nerves and I guess everything else I’m on, I stayed awake the entire time… so felt all the lidocaine shots into my chest and neck. But they had given me the max of what they were comfortable with (5mg versed, 300mcg Fentanyl)… so awake it was. After the lidocaine shots, the only thing I really felt was the tugging and pulling… sometimes that became uncomfortable and I would let them know it. The scariest part of being awake is not knowing if severe pain is coming, so you feel like you are bracing for it. That makes the surgery more difficult because you are tense and they are trying to thread a catheter into your vein in your neck. So I had to do all I could to relax, be able to hold my breath when needed, etc. I’m not afraid to admit that I was in tears almost the entire time, this was more from anxiety than anything else… so I asked if someone would hold my hand… within 2 seconds, the sweetest nurse came and reached under the sheet and grabbed my hand. Yeah… I’m a big baby, but it was scary and if someone I love couldn’t be in there to comfort me, having someone hold my hand and tell me everything was going to be okay was the next best thing. I wish I remembered her name… because the last 30 minutes of surgery went much better emotionally… I don’t think I stopped crying, LOL… but I felt safer. Once it was all over, they wheeled me back to recovery and brought my mom in… and then they FED ME! I usually have to beg for ice chips and this nurse brought me a ham sammich with some goldfish and a ginger ale! SCORE! I don’t remember a lot of the next few hours because the meds finally kicked in apparently. But my sweet mom took great care of me. And I ended up staying with my parents until Sunday morning… the help with the dogs and just having the company, was so nice. I always love staying with my parents… it’s always hard to leave. They didn’t send me home with pain meds… just suggested tylenol. And I was feeling okay, all things considered, when the numbing went away. So this is what it looks like today… still healing but I think it’s healing nicely. You can barely see the tiny puncture in my neck… and then the port placement is a bit below that… it’s a TINY bit freaky because you can feel the catheter running from the port up to the vein in my neck… but I know a lot of that is also swelling… the bruising has gotten much better. Another nice thing is Bard includes a silicone bracelet you can wear indicating you have a power port… they also give you a little card you can put on your key ring as well as a card to put in your wallet with all the information on it in case you are treated by someone not on your medical team.. out of town, etc.
I went to have my infusion Friday and the nurse who usually runs when she sees me because she hates my veins, went ahead and grabbed the head nurse (who happens to be one of my faves) and they decided that due to the swelling and tenderness, we would do a vein IV… one last time. This after I had just celebrated the day before that I experienced the last IV ever… and went out with a bang… I had one more IV to go. It actually went pretty good… very small bruising.
I was back at work Monday and each day is bringing more healing. The worst part is it really doesn’t hurt so bad so when I accidentally hit it or tap it straight on… I certainly remember it’s there, lol. It’s very itchy, and just tender, but I haven’t even used Tylenol since the weekend. So while it sounds like a nightmare, it actually wasn’t so bad. Not nearly as bad as Google led me to believe. When will I ever learn?
So some of my awesome friends from back in grade school sent me flowers… my sister assumed I would still be healing at my parents, so gave them their address. Nobody was there so they got the right address and delivered them Tuesday… TOTALLY made my day. What girl doesn’t love beautiful, colorful flowers? Pictures could never do these justice… it’s actually almost TOO packed with flowers, so I’ll be separating into 2 vases. Bright orange gerbera’s, perfect yellow lillies, lilac roses… just the sweetest surprise! So many thanks to Harold Trice and Greg Cooley… they always watched over us girls when we were younger and made sure nobody screwed with us. They were our big brothers… and it meant the world that they thought of me during this time.
And finally… this is something I would have liked to have seen as far as the procedure itself went… but couldn’t find it anywhere. These are the procedure notes from mine. I hope that it helps someone else one day. It truly was not a bad experience… being awake was weird, but I’ve been awake for worse procedures (hello… bone marrow biopsy makes this feel like a walk in the park!!).
Level of sedation/anesthesia:
Moderate sedation – the physician who performed the diagnostic/therapeutic procedure provided 38 minutes of continuous face to face moderate sedation services for this procedure with the assistance of an independent trained
observer who had no other duties during the procedure. Agent(s): Versed 5 mg IV, fentanyl 300 mcg IV
2 G Ancef IV
Total fluoroscopy time: 0.8 minutes
Dose area product: 1565 mGy-cm2
Air kerma: 9.47 mGy
Contrast: 0 mL
ACCESS: Right IJ
PREPROCEDURE: Informed written consent was obtained after a discussion of the risks, benefits, and alternatives to the procedure. A pre-procedure assessment was documented in the medical record. A Time-Out was performed
immediately prior to the procedure.
TECHNIQUE AND FINDINGS: The patient was positioned supine on the fluoroscopy table. The right neck and chest were prepped and draped in the usual sterile fashion. The right internal jugular vein was visualized under
ultrasound and found to be patent. An image was saved and sent to PACS. After anesthetizing the overlying skin and subcutaneous tissue with lidocaine, the vein was accessed under real-time ultrasound guidance using a micropuncture kit. A guidewire was advanced into the central veins under fluoroscopic guidance. The skin and subcutaneous tissues over the chest were anesthetized with lidocaine, and a 3 cm incision was made. The port
pocket was created using a combination of sharp and blunt dissection. After irrigating the pocket with dilute antibiotic solution, the port reservoir was positioned in the pocket. The tunnel tract was then anesthetized with
lidocaine and the catheter was tunneled through the subcutaneous tissues and out the venotomy site. A peel-away sheath was advanced over the guidewire. The catheter was cut to length and inserted through the peel-away sheath. A radiograph confirmed proper catheter location. The port aspirated and flushed without difficulty. The port pocket was closed with buried interrupted 3-0 absorbable V lock suture. A 4-0 subcuticular V lock suture was also placed. The incision was also covered with skin glue. The venotomy site was closed with skin glue. The patient tolerated the
Successful placement of a right internal jugular vein central venous 8 French single lumen power port. The port is ready for immediate use
Yup, I might just graduate at the top of the class in my Pulmonary Rehab. To be fair, there are 7 of us, I am by far the youngest and it would be a tough fight to pick 2 or 3 in the best shape breathing wise, LOL. But hey, it’s a plus in my life right now so I’ll take it! I’ve only had 2 sessions and have already accomplished what I will be required to do by the end of the 9 weeks (hold onto your sneakers folks… it’s 33 laps in 30 minutes!!! WOWSERS right? We won’t mention that the laps are REALLY small and 33 laps is a mile… it’s about the little steps people!!!!!). The goal of pulmonary rehab isn’t to become a svelt bodybuilder. The goal is to learn how to live with pulmonary disease in all different ways. From the most important aspect… breathing. And there are MANY types of breathing, for many different purposes. For instance, tomorrow our “classroom” part of the class will be on diaphragmatic breathing. Since your lungs essentially rest on top of your diaphragm, strengthening that muscle will help your lung health. Of course we all know about breathing for most cardio exercise… in through the nose, out through pursed lips… and I don’t know how that ever becomes second nature for people… or how you avoid holding your breath in situations when you are supposed to breathe. Even when I was extremely active and fit, I still didn’t get breathing right (ah, but now I have an excuse!!!). So back to what pulmonary rehab consists of… the breathing, cardio, exercise, etc. Naturally. Exercise and cardio health is of course important for every person, but even more so for those that are heart and/or lung compromised. Oxygen plays a huge role in exercise of course, but also in muscle development, recovery, energy, even down to how your liver breaks down carbohydrates… it’s crazy how important breathing is. I mean, we all KNOW how important it is… but we take it for granted. Every single thing you do 24/7 involves breathing, so when you start to lose it… well, shit gets real. So rehab teaches us how to use proper breathing to better utilize oxygen in ambient air, teaches us about the role of oxygen and breathing in exercise, teaches us about proper nutrition to make all of this easier. It also is teaching me quickly when my oxygen saturation drops, you slowly start to know what it feels like. I’d of course like to be able to keep mine up naturally, or at least know the techniques to bring it up naturally so I can stay off supplemental oxygen as long as I possibly can. There are many Alphas in their 30’s and 40’s that are on 24/7 oxygen. It’s something additional I’m not ready to worry about right now, so I’m doing all I can to prolong it. Eventually, I’ll likely need it for exercise, and that’s fine… but if I can learn to get through my day and night without being dependent on it, I’ll take that for as long as I can.
So, every Tuesday and Thursday morning, from 8am-10am, I am at Duke Wellness Center with my other pulmonary pals. I’m the only one with Alpha, but it’s also good for all of the respiratory therapists and exercise physiologists to work with an Alpha because while it is technically genetic emphysema/COPD… it presents earlier and different, and can involve other organs, so they have to think about more than just the lungs. I am convinced that the more people learn about this disease, the more people will be tested and diagnosed… the more people diagnosed, the more money goes into research and development… and they can start to research for a cure, rather than just band-aids.
I have people ask me often (and these are TOTALLY normal questions! Don’t get me wrong), “Are the infusions working? How are you feeling?”… it’s difficult to explain. The infusions aren’t are a cure. It’s not medicine… it’s protein from human plasma. Best case , it slows the progression of decline in my lung function almost to a crawl. Worst case, it doesn’t slow it down as much as it needs to be slowed. Since I lost so much of it prior to being diagnosed, I need to keep all I can. And we haven’t started on the liver side of things yet. So the answer to “are the infusions working?”… I don’t know. I will have another round of PFT’s in April, we will see where my lung function stands at that time. I’m still waiting for my liver biopsy to be scheduled, and from there we’ll deal with the liver side of the Alpha-1 equation.
So please know, I’m not being pessimistic about the infusions… but they are not a cure, and that was the first thing I had to accept. And they can stop at any time. We have a small business… if something happens to it, I lose my insurance and hope like hell I can get Medicaid and get the infusions covered and not lose too much time in that process. Insurance could stop covering the infusions… Aetna has already changed how they cover them. Countries that have government run healthcare, patients can’t get infusions covered. Insurance companies are becoming much more critical and rejection happy. So it’s not pessimism… I have tried to remain as optimistic as I can, but I am also realistic. There is a strong possibility I won’t be able to continue these treatments for 20 years. And that’s a pretty hard thing to swallow and absorb personally, much less try to explain to someone else while sounding happy, cheerful and optimistic. What I do know is that there is a pretty small number of us diagnosed with this disease, and within the support groups I’m in, it seems that the sentiment “RIP” comes up far too often for such a small group of people. Most recently a man passed away that DID have a lung transplant a few years ago, but after a couple of years his body started rejecting them. I learned recently of another man, 49 that had a lung transplant a few years ago, but started becoming quite ill last year… he passed away less than 3 weeks after a liver transplant. None of this is pessimism… this is Alpha-1. The reality is that percentage wise, your odds aren’t so great that you are going to live a full life if you have a severe deficiency. And please remember, I am still learning to live with and accept this diagnosis. I am still learning how not to break down when I see the worry in the eyes of my mom and dad when we talk about it… or how hard it had to be for my dad to spend hours looking for a life alert system for me so we could all sleep a little better at night. There is nothing about this that has been easy for any of us, and we are all getting through it the only way we know how. But know that I AM optimistic!! I do have FAITH!!! I do have HOPE!! And I do plan to FIGHT, literally until my very last breath. That I promise. I’m not looking for pity, I’m being honest. If someone sees that as me being needy or “seeking attention”, that is your issue… not mine. I have a very scary illness, one that I’m reminded of with every breath. What I don’t need is judgement on how I’m dealing with this. What I don’t need is you telling me that I’m going to “get better”… what I do need? A hug. A smile. A prayer. Love. Each one costs nothing, but means the world to the scared little girl on the other side of that smile.
We’ve been waiting for what seems like forever. Karen sent her test off over 2 months ago and still hadn’t heard back yet. So a week ago, she contacted them to see what the hold up was. Turns out, they were mailed back on 2/10… it came from a university and Karen accidentally tossed it as junk mail (Ooops!!!!). So they sent them out again and she received them today.
She had a 25% chance of being normal, 25% chance of Alpha-1 and 50% chance of being a carrier (there is controversy about this term, which I plan to talk about in a future blog post). So she has one good gene and one bad gene. It used to be thought this meant you were only a carrier, but the thought on that is changing. The good news is, she is very MILDLY deficient in Alpha-1 Antitrypsin… so mildly that she is considered “non-deficient”. Since she does have 1 bad gene, she will go ahead and get into a Pulmonologist (she may not choose mine after her first encounter, and that’s okay… but I’ll talk her into it!!!!! lol), go ahead and get a baseline for her Pulmonary Function Tests so she can keep an eye on that over the years.
It also means that they should probably go ahead and have my nephew Grayson tested. Karen is going to go ahead and test both her husband Anthony and their son Grayson. Even if Anthony comes back with 2 good genes, it is a possibility Grayson could get Karen’s “S”, and should know his status. Hopefully Anthony comes back MM and so does Gray… but the key is knowing. Had I known at Grayson’s age? I never would have picked up a cigarette… And while I would still have this disease, I would likely have a higher lung function right now. Perhaps not, but I believe that smoking progressed my disease further than it would have progressed otherwise. I would have taken better care not to get sick… gotten my flu shot, pneumonia vax, etc. I would have learned at an early age just how valuable our lungs are, and how we should never take the simple act of breathing for granted… Thankfully, Grayson is learning that through my experience and he will be able to educate others… I pray that is the only way he has to ever worry about Alpha-1.
And my sweet sister… she said something to the effect of “I’m sorry I couldn’t have gone through it with you”… meaning to go through this with me as in having A1 (because she is certainly going through it with me in every other aspect). Funny, I know she would… if she knew I wouldn’t go through this alone, she would take Alpha-1 and go through it with me if she had a choice. I just took about 15 minutes to get through actually writing that once I got past the tears. I am so blessed to be so loved.
Today was a good day. I had my first “real” Pulmonary Rehab session. Worked up a good sweat and the 2 hours went by quickly. I feel like I did really good for getting back to things… no oxygen necessary and felt I pushed myself pretty good. 9 more weeks…
I also had the sweetest visitor with the sweetest gift bag! Jessica Hunt (if you are in the Triangle, look up Hunt for Homes, Jessica Hunt… awesome realtor, awesome person, awesome friend!!!!!!!)… you may never read this but you made my day so much brighter today. With something I really never would have thought of but I will now for others in the future! Jessica put together the cutest bag (even the bag itself is awesome… It’s a Trolls “Good Vibes” bag) with the cutest card. Inside are little goodies and snacks, books of crosswords, word finds, sudoku, etc., cute pens, note pads… all sorts of things to make Friday infusions a little more cheerful!!! I’m so excited to take it with me tomorrow!!! Thank you so much Jessica!!!! I met Jessica through the fabulous Raleigh Women in Business Facebook group which is one of the very best groups EVER. We were able to help her out with some new computers and through that, she became a friend that I’m very grateful for. Soon after, I got a call from another RWIB friend, Michelle Gladstone (AFLAC rep extraordinaire! Yes, I’m repping my girls!!!!!) and had a great conversation. She just wanted to check on me to see how things were going and if I needed anything. Her daddy and family are going through some tough health issues right now, so I’d be grateful if you could life them up in your thoughts and/or prayers. Then on top of all that, I had a potential new customer call who was referred to us by ANOTHER RWIB awesome chicka, Melody Cubillos of Cubillos, Inc. (Social Media Marketing, advertising, any and everything)!!! I LOVE networking and I LOVE my girls from RWIB (which was created and run by the amazing Catt Fleetwood, Mortgage GURU and GODDESS!!!!!). So today, I want to thank all you ladies that not only made today great… you help make every single day great by supporting and uplifting one another. You have no idea how much each of you means to me!!!!!! Love to you all 🙂