Why is complete honesty about my health, especially to my medical team, easier said than done? I tell myself before each appointment, call, or email that I'm going to be completely honest and transparent, yet I continue to have difficulty relaying a true & accurate message when new health issues arise and/or current ones continue. Without meaning to, I often downplay severity of symptoms and situations by either softening the situation behind a smile, lacking descriptive details, or attempting to be positive and optimistic about what I am experiencing. I honestly try to be genuine and transparent during my appointments but often find it difficult to express my thoughts and symptoms to the full degree that I'm experiencing them. Why is that, one may ask?
A possible reason is because I have shared many of the symptoms over and over and over again with my medical team. How many ways can you say that your nauseated or fatigued? No matter how hard I try, it would be impossible to convince anyone that's not experiencing it the true impact that the severity of my symptoms have on my day to day functioning and quality of life. Most people feel miserable with being nauseated for a couple of hours or a day, I know I was prior to becoming ill. But now, it's a constant daily struggle and has been for 3 1/2 YEARS! My "good" day with nausea is likely comparable to a bad nauseous spell that I had 4+ years ago. I hear and see people complain about the stomach bug that's going around, how they were up all night nauseous, how they can't take anymore of the abdominal pain that began that morning, how weak they feel from not being able to eat for one entire day, etc. And I sympathize and empathize with them because I know the feeling, only mine is persistent and has lasted for years, not a day or two. It doesn't get better, it hasn't gotten better. It seems as though, with the exception of removing the pain due to my gallbladder and colon (which I have NO REGRETS about), that my issues especially regarding my strength, energy, nausea, and abdominal pain with oral intake only continue to get worse. Maybe part of the problem is that I don't believe that I could completely make them understand anyway, so what's the point? Sometimes, I just get tired of repeating myself. I've explained or shared so many of the same symptoms so many times over the years that I'm kind of immune to the words I guess. The severity level on the spectrum may fluctuate, but even when my "normal" symptoms are at the highest levels, I feel as if I am complaining over something petty or insignificant. I have, and I'm pretty sure so many others that deal with chronic digestive illnesses like me have as well, seen the expressions and heard the comments minimizing how destructive our symptoms are from our colleagues, friends, family, and even at times medical providers. "Everyone has tummy aches sometimes." "Yeah, I remember when I ate too much at the buffet the other night and I felt bloated and nauseous. I just took a Pepcid and in a couple of hours it settled down. Maybe you should try that?" "If you'd just stop thinking about it and return to the real world, you'd feel better and forget about your stomach hurting or being nauseated." "I'm tired too, but I keep going. I don't let it stop me. I just grab a coffee and I'll go to bed earlier tonight to make up for it." What they don't realize is that though their statements may be true in the lives of some people, that's not the case for me or many of the people I've met from online support groups. If you don't live this life, it's hard to fathom it, and statements like the one's above (even if said with good intentions) sound critical to my ears and can make me feel like I'm being ridiculed. So why does that matter? One may suggest to ignore the comments or forget what someone else said, right? Well, it's not that simple. Because when I start to say something about the nausea, bloating, pain, or fatigue - in the back of my mind I can't help but think about how the words are going to be perceived. I begin doubting myself. doubting being understood, and therefore doubting the possibility of any relief being found. There are times that I'm around people who are sincerely interested in hearing exactly how I'm feeling, want to know all the details, and need to hear them so they can best assist me. Usually, this group consists of my closest family members, doctors, and nurses. Whereas my family may desire to know the whole truth, it's just not feasible or necessary all of the time. Sometimes I have to keep some things hidden from them as it's for their own good. They can't worry about me all the time! I have to make sure that they hold on to faith that I'm okay, or going to be okay. Because ultimately I want to be okay. I also don't need them trying to persuade me to reach out for help over every little thing. I know that they love me, but sometimes I have to deal with things on my own. I have to learn to live with feeling bad and then let them know when symptoms begin to intensify or spiral out of control. My medical team on the other hand, especially my GI, home nurse, and therapist, need to be aware of anything and everything when they ask questions. I need to be completely open with them about how I'm feeling, what's not working, my health concerns, and even sometimes my health fears. And though I want to, it's just not always possible. Maybe it's because I want to be better instead of expressing discouragement. I have to remain "strong" in the eyes of others (and self), which means that no matter how horrible I feel, I must remain in control of my emotions. If I end up crying or become upset when sharing my health complaints with my medical providers, I increase my risk of not being taken seriously. Instead of focusing on the actual problems, my doctor's attention may divert to anxiety and depression treatment, even if my tears are just an expression of my frustration from wanting desperately to feel better. That risk is not worth taking, so I sometimes have to distance myself and my words from my emotions. For this to happen, I believe that I become quiet, vague, and indifferent to the symptoms that I'm describing. I need to ensure that I'm hopeful (even if I'm losing hope), pleasant, and calm as I don't need to chance becoming incorrectly labeled, dismissed, or overlooked. Is this reasonable and wise? On the mind standpoint yes, though on the medical side I'm sure that it can be counterproductive as it may make diagnosis and treatment more difficult when the degree of my symptoms are not clearly understood or recognized. Furthermore, my resistance to sharing the most accurate image of how my health is going may reside in the fact that I ultimately do want to be better. I want to eat, I want to participate in activities, I want to be healthier, and I want to live instead of just existing. However, I'm not sure how achievable that is now. Being completely open and honest makes me vulnerable. Do I really want to have my fears of illness confirmed? Do I need to take the chance of being told that I have to just deal since there's no other viable treatment options? I am aware of the importance of being straightforward about my health, but avoidance just seems easier and kinder than facing reality. I'm not sure how much more negativity I can take, not sure how many more trial and error treatments I want to pursue, and to be quite frank, I'm uncertain how much more I can handle with this illness. If there's nothing else that can be done, if I am running out of opportunities for better health, then should I even continue trying? Am I truly worthy to receive effective help or assistance anyway? I mean, I am just 1 person in this world full of millions and millions of other people that desire better health and healing as well. The majority of which are much more prominent and beneficial to society than I am. I don't know, maybe I am just being stubborn with all these attempts to improve when I should just deal with it and accept that sickness is the path that I am intended to travel. Instead of grumbling about how rotten I feel, I need to adjust my thinking. Instead of thinking about how sick, fatigued, or weak I feel daily, I need to focus on being content with all the positive things that are going on around me. But once again, these words and ideas or much easier said than done!
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Cruising along in life with beauty all around. A few minor storms rocking the boat, yet followed by calm waters and rainbows. Comfortable, relaxed, and under the impression that all in life is surmountable. That there is nothing that is unattainable if you give your absolute best and bask in the joys of life. But then unexpectedly mayhem arrives. A horrifying atrocious storm that leads you into a path of destruction. Turbulent ferocious waves slamming this way and that. Finally, a moment of tranquility. Hope slowly building, trying to salvage what survived, feeling like control has been regained when WHAM! Capsized! Confusion sets in! Caught completely off guard! Where in the world did that come from? Was there any way that I could have outmaneuvered or avoided this destructive, disastrous squall before irrevocable damage was accrued. How can I prevail and ensure that my purpose is achieved - when flooding waters are engulfing me, overwhelming me, making me feel as if passively decaying from my earthly vessel? Left considering if vanishing to my creator would be easier for my family and me. Would they not discover closure and rebound after sorrow to find life more enjoyable when not surrounded by my sick, stagnant, and dormant body? The waves continue colliding and demolishing my body's spirit and health. Ambushing me, drowning me, submerging me under raging waters. Will the storms and tortuous waves ever subside? Will I, the captain of my vessel, ever be able to survive the wreckage I'm immersed with? Or will I disappear completely, a castaway left at sea, an outcast of society? Slammed again and again. Tossed around, seasick, dizzy, and unsteady on my feet. Is it because I'm not worthy? Do I not deserve assistance? Is recovery even possible any more or is it just an illusion? An illusion that I believed to see because my hope was so immense, but not really there. Or maybe it's just too far away that the rescue from illness may be possible, to someone else, yet is too far away to be of any benefit or assistance to me and my fate. Regardless of the constant rocking from the continued waves, my weary eyes and feeble body envision my entire world. I identify the unconditional love that awaits me and awaken with an appreciation for life with my family. I'm reminded that God has a purpose that I have apparently not fulfilled yet. I vividly escape into dreams of witnessing and experiencing life's upcoming adventures with my children. I embrace my desires to hold my kids' hands and comfort them when life is hard while also looking forward to celebrating their personal accomplishments and dreams they undoubtedly will achieve. Admittedly, life is bleak and treacherous at times, but somehow we can't give up! We must continue to grasp ahold when our life seems to be falling to shambles, regardless of how vast the storm. We must keep our minds focused on the future and ones we love. We must maintain faith that God will keep us grounded. If we allow Him to, he will rescue us from despair by surrounding us with blessings, love, and support. We just can't let go! I have to remind myself that I can NEVER EVER GIVE UP! Eventually, the storms and raging waters will subside and when they do, it will be magnificent! Disclaimer: This list in not all-inclusive There are various other facts and experiences that I chose not to share today. The statements below are based on what I have encountered during my personal health journey. Other patients may have stories that are similar, less dramatic, more severe, or completely different than mine.
Why is initiating contact with my medical team difficult? I trust them, have good rapport with them (I think), and am able to talk and answer questions with them honestly. So why is it hard to reach out to them when health issues arise or worsen?
To some, including my family, my thoughts, my considerations, my fears, and my concerns may seem petty, silly, or ridiculous. But to me - they are reality. I have an amazing medical team that I trust. I feel confident and comfortable with the care that they provide. I honestly believe that they are on my side, wanting to help in any way they can to improve my symptoms and quality of life. I do believe that they are willing to go above and beyond to meet my health needs when needed, as they have proven this too me on numerous occasions, that they will try to protect me from unnecessary treatments/procedures, and even give their best effort to help me avoid the ER if at all possible. I can't even describe how encouraging and refreshing it is to have this sense of being in the care of a wonderful medical team. I am determined not to do anything to jeopardize it - as I've witnessed having doctors that don't care, one's that don't take the time to consider or treat their patients as a person, and have heard horror stories from people that have been "kicked aside" by their doctors and left with no one to turn to or depend on. I can't let that happen to me. I have to protect what's actually going right in my health journey! This journey is difficult and challenging enough as it is. But having a medical team that I have confidence, faith, and trust in helps make the journey a little less frightening. My key questions that keep revolving and challenging me are ... How am I suppose to know when my health issues are dire enough to let someone outside of the family know? When is it necessary and important for me to initiate contact with my doctors and/or home health nurse? Do you have difficulty contacting your medical team regarding your health needs and concerns? What are your reasons and experiences? Have you set a personal guideline to help you determine when to reach out and contact your medical providers? In reality I am still a rookie when it comes to having an ileostomy bag. In January 2016, I had my colectomy with ileostomy surgery as a result of Colonic Inertia. I am still learning as I go, trying new suggestions, and maneuvering through this new experience. However, along my journey thus far, I have made some personal discoveries that make life with an ileostomy easier. 1) Having an ileostomy has dramatically decreased the time that I have to spend in the bathroom! Emptying the bag literally takes a minute, whereas before surgery, it was common to stay in the bathroom for hours and hours before any relief was found. 2) I have drastically reduced the amount of medications, specifically laxatives, that I was dependent on for day to day survival prior to my colectomy. 3) Prior to surgery I was fearful of how often I was going to have to empty and change the bag. However, since surgery, I usually only have to visit the restroom a couple times a day (some people depending on their bodies and intake may be more often). The first month after having the ileostomy, I was having to change my bag numerous times a week, sometimes the same day. However, now, I only change it one to two times a week. Luckily, after the first month, leaks have not been an issue. 4) I tried a few different styles of ileostomy bags. My current preference and favorite has been the Convex Hollister. I have found the 2 piece ones to be the most comfortable and dependable one for me. 5) To keep the area around my stoma healthy, I use the stoma powder, barrier wipes, and moldable barrier rings. I prefer this much better than the stoma paste - though I had to use both the rings and paste to begin with until my stoma reached it's "normal" size. (It shrinks during the first month or two.) 6.) I prefer to take a shower with my bag still attached, though some people actually like to take a shower without the bag. To begin with, I tried covering my bag with a plastic bag to keep it dry while taking a shower. However, that was a huge and unnecessary nuisance. There is no reason to cover the ileostomy bag to prevent it from getting wet. It dries very quickly on it's own. I have heard of some people drying theirs with a hair dryer. I'm not sure which brand of bag they use, but my Hollister bags dry fast enough without worrying with hair dryers or any other drying technique. 7.) Swimming with an ileostomy is perfectly fine and rather easy. I was only able to go once for about 20 minutes, due to my health condition and current symptoms, but the bag was comfortably covered by my bathing suit and posed no problems or issues. Hopefully, by next summer, I will have my symptoms better managed and actually be able to enjoy the pool with my kids. 8.) With an ileostomy bag you can wear any clothes that you are comfortable in. I love wearing my sweatpants and yoga pants/leggings around the house. When I go out in public, I am usually wearing either jeans or jean shorts. The ileostomy bag is not noticeable under my clothes as long as it is empty (or near empty). I have found that wearing underwear that covers the entire bag is the most comfortable and desirable for me. I don't like it when the underwear "cuts" off in the middle of my bag. Most of the time I wear "normal" cotton underwear. If I am wearing a dress or if I am extra conscious about my bag for some reason, I will sometimes wear underwear that has some support, as they help keep the bag flat against my abdomen and reduce "ballooning." Do you have an ileostomy?
I would love to hear about your experiences, good and bad, as well as any ideas or suggestions that you would like to share regarding life with an ileostomy. Anyone that knows me, knows that I have a difficult time determining when symptoms increase to the point that I need to make a special point to contact and inform my home nurse and/or doctor. It's easy for someone else, like family members and friends, to suggest placing a call or sending an email when symptoms have progressed. However, for those living with chronic illnesses, it's not so easy. We deal with symptoms every single day so it becomes a trivial matter. I don't know about others, but for me, I begin second guessing whether or not the symptoms are important enough to ask for medical help or advice. My fear is that I will begin to sound like a whiner, hypochondriac, or nuisance over "minor" things which will make it difficult for others to believe me when something serious is happening. This mentality, though it has great intentions, can be extremely risky for me. There have been numerous occasions where I attempted to "tough it out" too long, resulting in dangerous consequences. It's difficult determining where to draw the line, when does survival actually become denial.
You see, the past couple of weeks my energy and strength has been more depleted than normal. I have been battling increased nausea, frequent lightheaded spells, sporadic discomfort around my PORT, moments of low grade temperatures, and occasional spurts of tachycardia. None of these symptoms are completely uncommon or new for me, so even though my family had been urging me to talk with my medical team, I didn't see the need. I mean, what could they actually say or do that would help? It's not like I was in continuous debilitating pain or completely unable to survive. I was trying to take the harsh moments in stride and hold on until calmer moments returned. I can't possibly reach out to my medical team every time I am feeling rotten. I have to learn to live with pain, discomfort, nausea, and fatigue as in some degree they have become "my normal." Eventually, after days of persuasion, I did break down and call my Home Health nurse to let him know about the off and on again discomfort around my site. I told him that my family was concerned, though I felt like I was alright. I answered a few questions that he had and felt comfortable knowing that he would be out on Friday to de-access my PORT for the weekend. Since all my vitals appeared fine and I was not in any discomfort at the time, we decided that we would monitor the situation over the weekend. During the weekend, I began having more spells of chills and low grade fevers, with my exhaustion levels rising. When Home Health came out on Monday to access my PORT, I was still experiencing chills. Being cold is not uncommon for me, but apparently wearing my favorite sweatpants and sweatshirt while wrapped in a heavy comforter during the summer while everyone else in my house is shirtless or in tank tops is considered odd. Go figure. My nurse did not like the symptoms that I was expressing, even though I reassured him that I would be okay. However, my heart rate being elevated made him think otherwise. While in my driveway he called my GI, who immediately placed an order to draw labs and cultures. It wasn't long before my nurse returned with the supplies to begin my bloodwork. Unfortunately, he was only able to draw peripheral labs (from arm) since we were unable to receive any blood from my PORT. In order to figure out what was going on inside my PORT, I had to visit the VIR (Vascular Intervention Radiology) department Wednesday morning. This visit was rather quick and I returned home feeling rather normal, well MY normal anyway, and felt confident that everything was fine. I firmly believed that I was just experiencing another "flare". To my surprise, I received a phone call around 8:10 Thursday morning from my GI. This was very unexpected and sent my head spinning. He informed me that my peripheral cultures from Monday were negative, however, the PORT culture from the previous day was Gram Positive, indicating an infection. All of a sudden, I was in a whirl of confusion. How could it be possible? I had been feeling rougher than normal, but not to the point that I couldn't handle it. An infection in my PORT??!! I know how dangerous PORT infections can be. I also know that having an infection there can drastically change if it enters the blood stream, placing me at a risk of becoming septic. I did not want that to happen. My GI stated that I would have to be admitted to the hospital for IV antibiotics and that I would most likely have to have my PORT removed. Red flags overwhelmed me as I began worrying about how I would be able to stay hydrated without my PORT. A few minutes later, my GI called back and told me that I would be able to receive IV fluids along with my antibiotics while I was in the hospital. I was then instructed to enter through the emergency department and let them know that he had requested that I come in due to a positive culture in my central line. Emergency Department!!! Ugggh - I did not look forward to this at all. How long would I be stuck in the uncomfortable waiting room. Thankfully, everything went very smoothly. Registering was a breeze, as my GI had already electronically documented my expected arrival and reasoning. Immediately, I was led to a bed, the ED doctor came to speak to me, an assessment was taken, fluids were begun, and an antibiotic - Vancomycin - was started. I was rather impressed at how easy everything was moving along. Prayers were being answered. I was even surprised and more than delighted when I saw who the doctor that was "officially" admitting me was. It was none other than, Dr M, my favorite all-time hospitalist. I had not seen him in over 3 years! He remembered me and my case very well. We spent a little while catching up, discussing new health issues since we had last spoken, and current symptoms that may have been related to the infection. I explained to him how difficult it was to distinguish which symptoms were worth noting and which were just common occurancies, especially being that none of them were truly uncommon. He completely understood my hesitancy in reaching out for help, though also reminded me that I know my body better than anyone else. After our conversation, he promised me that I would be well taken care of, that he would place me in the care of a doctor he thought I would feel comfortable with and a NP that I've become to know well. In addition, he said that he would make a note that I would be in control of my tube feeds and that I would be able to take a break or adjust the rating as I needed. He was the same doctor that I respected and appreciated years ago. Calmness overcame me until........ Craziness overwhelmed me. All of a sudden, not even 10 minutes after my doctor walked away, I began feeling really strange. My heart began thumping really loud in my chest. It was pounding harder and harder as my heart rate steadily rose higher and higher. My head felt like pressure was continuously building, heat radiating from flushing, and according to my mom changing to darker and darker shades of red. It honestly felt like my chest and head were going to explode at any time. As I tried to stand up and walk to the bathroom, my blood pressure dropped and dizziness overcame me. Standing there, depending on my mother and nurse to hold me up, while waiting for someone to grab a wheel chair for me. What was going one? Why was I all of a sudden feeling so awful? Come to find out, I had a reaction to Vancomycin. They call it "Red Man's Syndrome". I had never heard of that before, but learned really quickly that it's something I never wanted to experience again as well as something that the nurse's were fearful of. Apparently, it can be extremely dangerous, even lethal, if the reaction was to continue. After a break from the medicine, we were able to restart it and successfully administer it at a very slow rate. Everything else during my hospital stay was rather uneventful, which I did not mind at all. My PORT was removed on Friday, labs were monitored, tube feeds managed, and IV fluids with Vancomycin were administered. Absolutely everyone that I came in contact with during my stay - doctors, nurses, nursing assistants, etc were extremely helpful and pleasant. I honestly left without having any complaints at all regarding the care I received from the hospital staff. My GI even came by to visit me during my stay, which means a lot. I can't begin to explain just how important and reassuring it is to have a GI that truly cares about me as a person. All in all, I had a positive experience with a situation that could have been much worse. Once again, I was reminded of the amazing support team I have surrounding me. I am truly blessed! I may bend, but I refuse to break! Everyone faces their own trials through Earth's journey. Whether it's relationships, health, finances, inner struggles or a combination of all, we have choices to make. Some will be easy, some will be hard. But regardless, we hold the power to decide how we will handle the challenges. I choose to be ME! You can like me, love me, or even hate me, but I will remain true to myself. I choose to remain kind. I choose to openly care. I choose to advocate for my health community. I choose to maintain my faith in God and humanity. I choose to provide hope and inspiration to others when I can. There will be haters. There will be those that believe the world revolves around them. There will be backstabbers and fakers. There will be "friends" that appear to be around, but when called upon are nowhere to be found. See the thing is - though I may care what others think - my life does not depend on others' approval. If you don't love me for me, or respect me for what I stand for, then you can step out of my way. Life is not full of happiness and joy 24/7. Pain, sorrow, sickness, and tears are inevitable. I choose not to sit silent! Criticism will not stop me. Mocking will not hinder me. The hurtful comments and words may put a dent in my spirit, but they will not break me. I will regain composure and continue marching forward. One thing I've learned in life is that nothing is perfect, no matter how hard you try. We must be willing to stand up when we fall, fight for our own wellbeing, be flexible, and willing to bend. I will not lie! I have experienced life struggles that have cracked me. More times than I can count I've depended on God to help heal my mind, heart, and soul when I felt like I was falling to pieces. Life has wounded me, my health has bruised me, people have disappointed me, tears and sorrows have drowned me. Faith in God and HIS plan has saved me numerous times. So while some sit high on their thrones, throw insults to injure, or make their judgemental accusations, I will stand tall! I will remain strong! I have an amazing team of warriors in my corner and GOD as my leader. So attempt as you may, I will take your heat. I will bend, twist, and maybe even crack. I will survive through disappointments. I will take my health one day at a time. I will live from my heart. The devil and his messengers may try to destroy me. God may send me on journeys that I don't completely understand or lead me into battles that are a test of my faith; All with a purpose of developing me into the masterpiece that HE envisions. I'll continue to accept all challenges and overcome any obstacles that become a part of my journey. I have an everlasting trust that God will not allow me to fully break! HE will continue to send calmness and support during my storms, even carrying me when I become too worn to endure any further. God is my maker and HE is my protector. I may bend, but I will NOT break! © 2015-2017 Trisha Bundy ALL RIGHTS RESERVED 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. Sincerely, Trish |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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