Our neighbor is an avid cyclist and has completed a 100-mile run. I asked him if he has ever woken up on the morning of an endurance event feeling tired, as our energy level can vary from day to day. He said that he gets in a zone on days when he is contending and is very competitive and focused. I think the same applies with patients. When a health hiccup arises, we concentrate and focus on doing what we have to do to overcome it. I believe so much in life is mental and continuing to fight is a testament to the human spirit.
Following two hospital stays in July, I became anemic. So much that I had to receive iron infusions and B12 shots once a week for four consecutive weeks. As I entered the infusion therapy center, an identification band was placed on my wrist and I was escorted to an open room filled with patient stations. The chairs reminded me of the chairs I sat in when I had dialysis treatments. There were small curtains on either side of the chairs to provide privacy. As I looked around the room I knew we were all battling something, as this facility takes care of very sick people enduring chemotherapy to patients like myself in need of a boost to increase red blood cell count. We were all there doing what we needed to do in hopes to feel better.
After my vitals were recorded and I reviewed my health chart with a nurse, an IV was administered. The nurse connected the bag of liquid iron to the IV tubing and began the infusion therapy. Iron is very dark brown in color and can be harsh on the veins. My veins are quite tiny and fragile. I quickly learned my veins’ sensitivity to iron. This made each treatment difficult as my veins would weaken and multiple IV’s were needed. During the final session, the nurses were unable to find a strong enough vein and had to use an ultrasound machine to locate a deep vein by the artery in my left arm that could withstand the iron infusion. Although many IV attempts failed, my veins became visibly red and sore from the iron, and an ultrasound machine was needed to find a deep vein, the nurses and I remained focused and did what we needed to do in order to get the necessary medicine in my body.
As I watched the dark brown liquid iron flow into my deep vein (only detectable by an ultrasound machine) I couldn’t help but overhear the conversation next to me. Although a curtain blocked the visibility of the patient next to me, his words spoke loud and clear to my heart. The elderly man had a long conversation with his nurse. I did not hear what his health condition was, but it was evident that he was very ill. He stated his frustration with his doctor, confusion with his health care plan and why his blood work results were not improving. The man expressed his thoughts of wondering if he should give up and if his doctor is not helping him because he wants him to die. He shared that his wife is the optimist and he is the pessimist. This man that I could not see, I now wanted to help. I was impressed with the advice the nurse provided and the compassion she showed. The nurse shared that he has to be his own advocate, to keep after his doctor and to not expect instant results after one infusion therapy. The man replied, “I just don’t know if it is worth fighting for.”
I sat in my chair filled with varying emotions. I wanted to pull the curtain back and console him. I knew he was having a hard time, but I didn’t want to cross the privacy line. The nurse expressed a lot of the thoughts I would have suggested to him. When his treatment was completed, he got out of his chair and took a few steps past the curtain and into my view. He happened to look my way. We made eye contact and without thinking, I said, “It’s worth fighting for.” He paused a moment and responded, “I know, it’s just hard sometimes.” I sympathetically said, “I know.” We gave each other a compassionate smile and he walked off. Few words were spoken, but I felt I had to say something. As patients, some days we are more energetic than others. Like the man in the chair next to me, some days we may feel more defeated than others. No matter what our energy level is, we must stay in a positive mental zone and do what must be done to take care of our health. Why? Because ‘it’s worth fighting for’ and because you’re worth it.
Hi Valen,
Thanks for another lovely article. You have a knack for expressing yourself, and I appreciate your situation. I have had quite a few infusions, and I know that they are tedious. I was supposed to receive another epoteine (sp?) injection last month, but didn’t need one. Yea! I’m waiting to find out now if my second prospective donor will be qualified. I remember one of the transplant team members telling me that waiting is the hardest part, but for me, the waiting has given me the opportunity to appreciate my journey, and what I’ve learned so far. Stay happy, and energetic! 😀
Hi Karen,
I am happy that you enjoyed this blog post. Tedious is a very good way to describe the infusion process. Wonderful that you didn’t need the injection last month. Thank you for sharing your positive perspective. It is wonderful to have such a strong mental outlook. That will help you greatly along your journey. Keep that wonderful spirit and I hope your second prospective donor will be the match that you’ve been waiting for. Here’s to receiving the gift of life real soon! 🙂
This post came at a really great time, as I just found out yesterday that I need to get an iron infusion because I have become anemic. I am worried, but your post has made me feel better. Thanks so much for sharing your journey!
Hi Stephanie,
How ironic is that? 🙂 I am so happy this post came at a great time for you and helped to make you feel better. I had four iron infusions and they worked great and increased my red blood cell count to normal range. I was super tired and weak and those symptoms have improved. Good luck! I hope everything goes well. It is an honor to share my journey. Thank you for your support and reading my blog. Here’s to a successful iron infusion. Hugs!
Hello, Valen
I wanted to take a moment to express my gratitude for your blog posts. I’m a 36 year old male who was diagnosed with PKD a week ago today. I was adopted, so my family medical history was non-existent, and I was diagnosed during a follow-up visit after being hospitalized with a kidney stone. Needless to say, my initial reaction was some combination of shock, terror, sadness, worry and hopelessness. I can’t honestly say that positivity and determination were present during the following days. Friends and family say: “It’s going to be alright!” I know they’re trying to reassure me, as I’m sure many of our families have, but I don’t know that I was able to share their sentiment. I came across your blog while researching the disease and I can’t tell you how inspirational the posts have been. My kidneys are still functioning normally, so I’m not where you or many of the patients who have commented on your posts are, but reading what I have and knowing that I’m not, and will not be, alone… It’s reassuring. It’s the best I’ve felt all week. Sincerely… thank you…. and thank you to your readers who have been so willing and vulnerable to share their stories. PKD will not beat me.
Best,
Shane
Hi Shane,
I saw your post, and since I am the only female in my family with PKD, I thought you might be interested to know about the male situation in my gene pool with the condition. My dad’s great uncle had it. My grandfather had it. My Dad had it. He received a transplant on his 40th birthday from a young man who was hit by a car. My brother got his new kidney from a male cousin when he was 38. My 21 year old son has just been diagnosed. He was being tested as my potential donor. He seems to be handling the news well, like you are. It seems to affect men sooner, but I can only go by what has been the case in my family. My brother is doing great- in fact, he has never looked better. We are all part of this, and together we will be stronger. It really can have a great outcome. Take care.
Hi Karen,
Thank you very much for sharing your family history with Shane and your positive outlook with all of us. I completely agree … “It really can have a great outcome.” 🙂
Hi Valen,
Thanks for your kind response, and for establishing this support system for all of us. After I wrote to Shane, I received a message from my friend who is being tested. Her lab work shows that we have compatible blood types, so I guess this is where I hold my breath.
Hi Karen,
You are very welcome! It is an honor to have established this support system. Aww, that is fantastic news! Your beautiful spirit shines through your words and I too will join you and hold my breath. 🙂 Please keep us posted.
Hi Shane,
I have read your heartfelt message several times and please know how appreciative I am for you sharing your story and sentiments. I am sorry for your recent diagnosis, but so happy that you found my blog. Hearing you say that this is the best you have felt all week, gives me the motivation to keep writing and keep sharing. Thank you for that. I am grateful that your kidneys are functioning normally and hope that continues for a very long time. All of the emotions you have are very normal. You sound like you have a strong spirit and that will help you greatly. Since you do not know your family history, please know you have a PKD family here. Please let me know if there is anything I can do to help you along your journey. As I gained knowledge of PKD, then came the positivity and determination. I hope the same will happen for you. Wishing you the best of health!
Karen, Thank you for sharing! I’ll be holding my breath for you! You’ll be in my thoughts and prayers.
Valen, Your blog is clearly a source of inspiration and hope for everyone here. I’m mutually happy that I found it. The support structure here is beautiful, and I’m happy to be part of this PKD family. Through my research I have gained more determination to beat this. I recently registered for the Philadelphia Walk for PKD and I’m looking forward to meeting more friends, and to hopefully being an inspiration to each other.
Thanks for your support. It means a lot. Go Shane!
Go Shane! AND Go Karen! 🙂
Hi Shane,
I am impressed by the knowledge you have gained with just being diagnosed and for your interest in becoming involved. I am originally from York, PA. I lived there until my late 20’s when I moved to CA. I am now 31. I founded the South Central PA chapter and organized several walks. They are fantastic events as you will be surrounded by kindred spirits. I hope you enjoy it. Thank you for your kind sentiments. Positivity goes a long way and yours is shining through your thoughts and actions.