Positive Progress

May 3, 20216 min read

So much recently has been going on. I may be all over in this post so bare with me!

I want to start off by saying don't ever take your health for granted! Just because your healthy now doesn't mean something can't happen to you. Make your health a priority. Whenever you feel off or something just isn't right get stuff checked out! The most important thing you can ever do is prevent an illness before it happens or in its early stages. Never wait until things are so unbearable to get help!!

It's also ok to communicate with your doctors about what you think maybe wrong or what tests you'd like to have done. Remember doctors practice medicine they don't know or will always know the answer. And if there's something you truly believe to be beneficial to you speak up! If they deny you, its never harmful or bad to keep trying and fighting for what it is you need!! This is your health, your body and you know what is best for YOU!!! Remember that!!

For 2 years I fought relentlessly for a G-tube. Something that is so easily placed and something that is pretty standard for those with moderate to severe Gastroparesis. During that time my potassium dropped - among other things. I became horribly malnourished which lead to me getting a J-tube. For whatever reason though my gastroenterologist would not place a separate G-tube.

While I found a formula that worked really well for me my intestines started to slow down more and stopped absorbing the nutrients I needed. I was prescribed potassium BUT my body did an awful job absorbing it. I'm also very sensitive to fluids and become water loaded too quickly, which lead to more vomiting. IV fluids and potassium was not an option. I spent two years vomiting nearly everyday! It got to the point where I stopped eating all together.

No matter what I did I'd vomit, ate I threw up, I drank I threw up. Vomiting leads to electrolyte loss. Yup this meant I was losing potassium. I pleaded with my doctor to place a G-tube. I knew it would offer relief from not only nausea and vomiting but it would possibly allow me to eat again. I was denied over and over without any real good reasoning.

So what does this have to do with everything now? Well severely low potassium over a 2 year period had a VERY desveststing effect on my body. Low potassium can cause temporary paralysis as well as respiratory failure!

My inability to eat caused me to loose over 50lbs! I was severely underweight and no one really seemed to care. As my intestines slowed down it also meant running my feeds or even water hurt extremely bad even at a low rate. I was living off a few chips or crackers a day, and sips of soda to take my two meds that weren't safe to put through my J-tube.

I was having muscle issues and weakening long before my potassium ever dropped. My potassium on a norm is slightly low which seems to just be how my body is. BUT never was it in the severe range before Gastroparesis worsened and I wasn't able to consume food and vomiting became a daily thing.

My pulmonologist thought my potassium maybe to blame for the respiratory failure but I was going through SO many tests to find other answers that might be why all this was happening. Ehlers-Danlos Syndrome doesn't usually cause respiratory failure. I ended up getting genetic testing done but the wait period was 3-6 months, maybe longer.

My respiratory function declined fast!! I was dying and the only thing that could save me was a tracheostomy with ventilator support. Had it not been for me meeting my respiratory therapist and learning that a trach wasn't all that bad or as horrible and scary as I thought, I would have NEVER gotten it done. I would have died as I was against life support!

Well genetic results are in! They are all normal! Nothing to explain the respiratory failure. No worse form of EDS either that could also maybe explain things. Nope everything came back fine. So other then Ehlers-Danlos Syndrome and its comorbid conditions there was nothing genetically to blame for my medical decline.

I also met with my POTS specialist to pick his brain on if there was a connection between Dysautonomia and Respiratory Failure. There isn't.

Since getting my G-tube I have been able to eat small amounts again! I have been eating foods known to help lung function as well as things high in potassium. Since doing this for near two months I have noticed small changes. This includes not only lung strength but also weight gain and my overall energy returning! While I have to drain my stomach, I'm not loosing the amount of stomach contents as I would vomiting by mouth.

As of today May 3rd I have been off the ventilator for 8 days. I had my pulmonary appointment last Thursday and we discussed a plan to have my tracheostomy removed! Trachs are awesome and life saving but they do come with a number of risks. So if you can get it removed, the sooner the better. Honestly I never thought this was ever going to be an option. I never thought I'd live to see the day I'd ever be able to have it removed.

For the next 4 weeks I have to get my potassium levels checked to make sure they are within normal range. I also have to get a chest x-ray and cap my trach for about 3 hours a day.

In 4 weeks I go back to see my pulmonologist, who will then downsize my tracheostomy. I will then need to be capped for 16 hours a day. This ensures the upper airway works and I can tolerate having the trach removed. I will then go back after a few days to have the trach taken out.

Downsizing also allows the stoma to shrink in size. Once taken out the stoma will be covered with gauze and should fully close within 5-7 days, it can take longer or shorter depending on the person.

It's shocking now thinking back on how everything unfolded and it was easily avoided by a G-tube. I would have died and all it took was a tube!! At the time no one knew what the for sure reason for the respiratory failure was.

It took me literally being close to death for a doctor to finally agree to place the G-tube. Before now no one ELSE (besides pulmonary) thought that my severely low potassium was the cause or that it could be doing anything like killing me.

I fought 2 years for something so simple that could have saved my life. I knew just how beneficial a G-tube could be in the management of Gastroparesis and was denied time and time again!!

Had I quit fighting I don't really know how much longer my body would have survived and its scary to think about because of how truly bad things got. Being unable to breathe is so scary but the pain that comes with your body slowly deteriorating is so awful. I wouldn't wish anyone to experience what I did. Dying is painful!!

I'm glad I'm not the type of person who just gives up and quits just because someone tells me "no". I didn't seek another gastroenterologist because meeting a new doctor and going through the process which can be lengthy and there's no guarantee they would have placed a tube any faster. Also G-tubes in my area seem to be an unseen thing in adults so I'd likely have to fight any doctor I saw.

I'm just thankful to be a live and that I am improving and gaining my life back. As I always say live in the moment and make a million memories because you never know if its your time. Life is never a guarantee so enjoy it now!! Never ever take your health for granted!!

I still have a ways to go as I work to get my weight up and be healthier myself, but I'm here and I'll never stop fighting!! Neither should any of you. You are enough and your life is so valuable. No matter what you are going through you have the strength to work past it and rise above! Never give up and never take no for an answer. If you truly want something or believe in something you'll find a way.

I want to thank everyone who helped support us and get us through a very difficult time in our lives!! You all are very much appreciated. We wouldn't have been able to make it without you all. I seriously cannot thank you all enough!! I hope to repay each of you one day 💜

I'll update as things continue to improve and what I may experience in the opposite journey of recovery and gaining more strength