I have been very blessed with my medical team and have learned to "pay it forward" by sharing my compliments to all involved. The following letter is one that I wrote and sent to my Home Health Care nurse and his employer. In order to respect their privacy, I did not include their names in the copy I am posting on my blog. (Of coarse, in the original one that was sent to them, his name and the company name was mentioned numerous times.)
To whom it may concern,
Prior to Jan 21, 2016 I had no personal experience with having a Home Health Nurse visiting my home to assist me with my medical needs. However, over the past 3+ years, I have had numerous experiences with nurses during clinic, ER visits, procedures, and hospitalizations. Additionally, I am active in online Gastroparesis & Chronic Illness support groups and hear all the time about the experiences that others have with their nurses. As a result, I have gained a lot of knowledge about the impact that a nurse can have on one’s well-being, patient experience, and health status. I have also learned to appreciate a great nurse when you find one, not only by letting them know personally but by also sharing with others, including their supervisors and the medical providers that employ them.
I’d love to say that every nurse that has been or currently is on my medical team has been amazing, unfortunately, that is definitely not always the case. As I’m sure you know, it can be difficult to find medical providers (nurses, doctors, etc) that are able to empathize, communicate, and create a trusting relationship with their patients. Having a chronic illness, one that is not well understood or even known of, can be difficult for anyone. In my case, my digestive system became dysfunctional. Being unable to eat and process it normally (gastroparesis, colonic inertia, etc) has created severe symptoms of nausea, heaving/vomiting, intense abdominal pain, fatigue, dizziness, dehydration, etc. These illnesses have made me dependent on tube feeds, an ileostomy bag, and currently IV hydration as well.
On Jan 8, 2016 I underwent surgery - a colectomy with ileostomy. What was suppose to keep me in the hospital for a few days, ended up keeping me for 2 weeks due to complication of an ileus, dehydration and difficulty receiving adequate nutrition thru my feeding tube. Eventually, I was discharged home with a PICC line and Home Health Nurse. I was frightened to have a home nurse as I often hear horror stories from other patients regarding their experiences. I was also fearful of having a PICC line due to possible infections. I was scared that my nurse would be mean, disrespectful, uncaring, judgemental and not properly take care of my health safety, such as not maintaining the sterilization necessary to decrease risk of infection. Many of my online friends have been hospitalized and some have even died from Sepsis infections.
I am glad to report that my experience thus far with my Home Health company has been a very positive experience. All of the nurses that have been a part of my care team from have been friendly and respectful. I thank you for employing nurses like them on your staff.
With this letter, my goal is to discuss how amazing my main nurse has been. Beginning with my PICC line and currently with my PORT (both used for IV hydration), he is always very thorough and diligent with maintaining a clean and sterile process. Regardless of if he’s exchanging the dressing around my PICC, when I had it, or currently accessing my PORT each week, I can depend on him to keep me as safe and as infection free as possible. I appreciate how he explains what he is doing along the way, especially if something “new” is happening. I have been impressed with how well he communicates not only with me, but also with my husband and even my Dr when the need arises. He appears to truly listen and is able to effectively communicate my needs (even if I’m not sure of them myself) to whomever necessary. It takes a lot for me to trust new members on my medical team, but he has demonstrated time and time again that I can trust him. I feel as though he actually cares about my health and wants to help me improve.
I’m confident that he’s qualified and able to effectively advocate for my medical needs if needed, as he has already done so on numerous occasions. One was when I became dehydrated, lethargic, and weak. I was desperately not wanting to make a trip to the dreaded ER, even though I knew it was at that point. My home nurse worked alongside my husband in convincing me that it was time to seek assistance from the ER, while also working behind the scenes with my GI to get fluids back on board at home. Another example was the time that I began showing signs of an infection near my PORT. With increasing pain around my PORT, I eventually broke down and called him on a Sunday evening. He was very encouraging as he made arrangements to come by and check out my PORT. Due to the pain and symptoms, he instantly removed my PORT needle and noticed that I had signs of infection near my surgical site. Calming my fears of not wanting to return to ER, he was able to talk directly with my GI (thanks to them already having an open line of communication) and get antibiotics on board immediately. Thankfully, the antibiotics eliminated the infection and saved me from having to have my PORT pulled and replaced. If it had not been for his calm but swift caring actions and problem solving skills, I would have either ended up in the ER or had to face a more severe infection. Additionally, he has also contacted the pharmacist on my behalf when we were having issues with receiving much needed nausea medication due to insurance barriers.
Other characteristics that I value from his care include: his willingness to learn more about my condition, his positive and welcoming persona, and his time management. He always arrives within the expected time or lets me know if the time changes, which is to be expected within the healthcare profession. At times I have had to schedule necessary medical appointments, which can influence the time of day that I’m available for a home nurse to visit. When this occurs, my home nurse has always been flexible to arrange a time that works around these appointments and has remained positive, never making me feel like I’m inconveniencing him - even if a last minute change occurs due to traffic. (My Drs are all out of town.) Something else that I appreciate from him is that he is extremely easy to talk to and makes me feel comfortable. He does not make me feel inferior, like some nurses in my past experiences have. Many times (as result of past experiences and fears) I find myself downplaying symptoms or hesitating to reach out to medical providers. I don’t want to be a nuisance or have to return to the hospital. In fear of being mocked, misunderstood, dismissed, ignored, and "labeled", I've become stubborn. I do my absolute best to tough things out as long as I can, sometimes admittedly too long. However, he has been able to recognize when I’m having difficulty and instead of judging me, he encourages me to keep him and my doctor updated while also reminding me that it’s okay to call when there is a problem (not to wait it out). He has never made me feel awkward or bad about having to call him for any medical issue or concern when they’ve appeared.
In conclusion, I want you to know that I am completely satisfied and thankful for the care that my Home Health company has provided me with. I would definitely recommend them to others that are in need of Home Health Care services. I can honestly state that I have witnessed first hand the integrity, caring, compassion, and professionalism that I expect and respect from health care providers; all of which are posted online as their core values.
As a result of my past experiences, I have learned to never underestimate the power and impact of having a compassionate, empathetic, and kind nurse. Whether in the physician's clinic, inpatient at a hospital, scurrying around the Emergency Department, or a part of one’s medical team as a Home Health nurse, nurses are an essential part to one’s patient experience and health journey. The past 3 years have been difficult for me. Learning to live with my health issues and lifestyle changes would be impossible without the wonderful nurses that I have met along the way. Having a health care team that you can depend on and trust is important, especially for those with chronic illnesses. Having an exceptional nurse who connects and communicates well with everyone involved (patient, family, & doctors) is definitely a valuable asset, and I feel very fortunate to feel as if I have such an exceptional nurse as part of my health team. Not only do my family and I respect him as a nurse, but so does my Dr, and that speaks volumes. I hope that eventually I will regain better health, but until that day comes, I hope to continue receiving the extraordinary care that my nurse, and nurses similar to him, provide under your leadership.
Yesterday, though I wasn't feeling great, I put on a smile and went out with my husband and kids to celebrate our 16th wedding anniversary. If it was any other day, I would likely have listened to my body and declined. However, I didn't want to disappoint them or myself. They had just returned a day earlier from a weeklong vacation, from which I stayed home. We all had been looking forward to going to see the movie together. So without complaints or excuses, I attended the movie and thoroughly enjoyed it. Afterwards, I accompanied them to a local restaurant and watched them eat a delicious dinner as I sipped on a little strawberry lemonade. I have to admit it was a nice evening.
However, this morning has been a more difficult challenge. My body is completely exhausted. Getting up this morning was frustrating to say the least. In fact, my physical state is so weak, fatigued, and sore that I returned to bed for another couple of hours after beginning my tube feed.
Finally, forcing myself to get up and migrate to the couch, I have continued to struggle. I catch my mind wanting to be upset, wanting to feel hurt, wanting to place blame BUT I WILL NOT allow myself to break today. I KNOW that yesterday's experience with my family was worthwhile. I have no regrets and though I hate it, I HAVE to accept the consequences. It may not be fair, it's definitely not easy (especially since it was only 3 hours of sitting outside of the house), but for now it's the price I have to pay with my illness.
Click here to actually see the reality.
Days like today I can't help but wonder why?
Why do I keep trying?
Why do I keep allowing my heart to be torn?
My physical struggles are difficult enough,
So why do I keep letting my guard down emotionally?
Witnessing others' battles, day in and day out, within the groups is tough.
I have debated trying to distance myself,
but then someone may be left to fight this battle alone.
I've attempted separating my GP life from my personal life,
but how is that even possible when my health is such a major part of my current life?
Selectively I choose which friends to connect with on more personal levels,
which friends to trust and strengthen my ties of communication.
But when those friends hurt,
when those friends die,
It's like a dagger stabbing my heart.
Emptiness and numbness become so overwhelming
But without letting friends in, who would I be?
Some "friends" have disappeared since illness consumed me.
Those that remain don't truly understand
not like the friends I've connected with online.
They have great intentions and mean well,
I know, they too, are concerned, pray, and care.
But only those living it can truly grasp what we endure.
My newest friends I have never physically met,
may never have the opportunity to physically meet,
But their friendship is valued greatly and is very real.
The friends I let in, along with my family of course,
become the strength behind my smile,
The very smile that hides my tears but also shines with joy.
They are the encouraging voices behind my fears.
They motivate me to live with purpose, share my story, and fight.
They remind me of the beauty in life that still exits,
Remind me of why I can never give up.
They redirect me to family, faith, and love when I become weak.
I treasure my loved ones,
I treasure my friends,
both new, old, near and far.
I know that I must be willing to face hurt and sadness
in order to experience love.
The tears just don't become easier.
Walls eventually become stronger and taller,
More difficult to break down and enter.
I become frozen, lost and uncertain of how to move forward.
But soon I realize that the pain of losing dear friends
is a small price to pay
for the friendship, talks, and smiles that were shared along the way.
So here I'm left
reflecting and appreciating all that I have,
full-heartedly loving those that are close and dear to my heart,
while remembering and missing those who have left too soon.
Thankful and blessed for all the amazing people
that GOD has arranged to be a part of my life journey.
© 2016 Trisha Bundy ALL RIGHTS RESERVED
I can not deny that many hours are spent reflecting upon my journey through life thus far as well as considering what it could and even should be today and even in to tomorrow. It would be easy to say that I wish my health has not been a key factor in the past few years, but saying that would not be entirely true or accurate, as my health has helped me embrace a deeper appreciation for life and relationships while also helping me become more in tune with my body and inner soul.
The health aspect of my journey has been difficult. One that I would not wish on anyone else. One that I would have probably given my life to avoid. But, it has molded me into who I am today.
Yes, there have been days that I've wanted to give up. There have honestly been days when I wanted to travel the easiest route possible, the path of avoidance and denial. There have been troubled times, many more recently than I'd like to admit, that I let my fears and symptoms have control and literally hijack my emotions, leading me down a dangerous route, left to wander in pity, guilt, and anger. I recognize, when my vision is clear, that being held hostage by fear will eventually drive me over the cliff. I would be left unprotected in a deep canyon, weak and exhausted, silenced, and barely breathing. Instead of living, I would be left with simply trying to survive. Full of dread, withdrawn, and isolated from society and most importantly loved ones. This path would most likely either create a passive, no action, allowance of struggles that seem endless or constant morale bashing as I unsuccessfully try to claw my way out of a rocky wall of defeat. I know that this alternative, this dead end, is not the path I want to journey. Somehow, I have to be strong enough not to let the doubts and fears in my heart and mind hijack my self-worth and send me in the direction of complete destruction and despair.
Another direction, would be the extreme opposite. Depending on others too often, giving them complete control over my life experience. Metaphorically, letting them attach me to a bungee cord, and be at their mercy. In their hands, I would also be hostage. Of no action of my own, I would be sent free falling, whipped around, dangling, and left in low agony until they decided it was time to slowly hoist me up just to be knocked down over and over again. A continuous cycle that would leave my head spinning, taking away the value of my life, leaving me no time to enjoy or witness the beauty that can be found around me. This course of action would eventually lead me down the path of no longer being respected or taken seriously. I would lose the capability of fighting for what I wanted in life and it would become impossible for me to hold on to the connection with those I care so deeply about. So while "Bungee Jumping" can be a fulfilling and necessary path to take occasionally, it is not my ideal choice of direction. I need to feel as if I still have some control over my life.
That being said, what would my ideal journey be like?
I see my ideal journey as being a meaningful crusade through life. With excursions and adventures surrounded by purpose and beauty. The road would undoubtedly have twist and turns. There would be enjoyable smooth roads, lots of laughs, and even an opportunity to observe small glimpses of Heaven on Earth. Realistically I know that there would have to be small speed bumps and storms along the way. How else would I be able to learn life's lessons and appreciate the rainbows of life? While navigating this path, I would stand up strong and face my fears, giving no one else complete power over my emotions and choices. Tears would flow, some of them from joy and happiness. Along this journey, I would strive to make a difference in the lives of others, be the "authentic" version of me, and prepared to meet each upcoming day with a positive attitude. I would be content, at peace, and ALIVE with many exciting and treasured memories.
So how do I get there? How can I regain and maintain the ability to effectively choose the best course of action, the most suitable direction of life? How can I protect myself from being held hostage and stuck riding blindly down a path that I truly don't want to follow? I would like to say that it's as easy as grabbing the steering wheel, silencing and kicking the negative and discouraging thoughts and voices out of the vehicle, and continuing forward without them. Unfortunately, life doesn't work quite that simply, does it?
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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