Month: August 2024

This month, I was hospitalized for 15 days due to bacteremia, which is when you get an infection in your blood stream. It is very dangerous, because you can end up with sepsis, which is life-threatening.

The most likely cause, in my case, was my PICC line. So, they had to remove it and send it off to be cultured. The tip was not infected, which is very unusual, so we still aren’t exactly sure what caused this infection

Since they removed the PICC line in my right arm, the next step was to put a new one in my left arm. We faced a problem though. I didn’t have a single vein in my left arm that was wide enough to support a PICC line.

So, instead, I have what is called a “tunneled chest inter-jugular double lumen PICC line.” That sure is a mouthful! It means my new PICC line was tunneled under my skin across my chest, and it is located right above my right breast. It really hurt when they tunneled it. It was a minor surgical procedure.

This is a very inconvenient position. I can’t wear bra because it would put pressure on the PICC line. The lumens either have to come out over the top of clothes or through the underarm, neither of which looks good or feels good.

You have to use stick deoderant because gels or roll-ons will get on the lumens. You can’t face forward in the shower anymore, because you’ll get the PICC wet. Baths and hot tubs are out of the question. And of course, no swimming.

Showering now means sitting on a shower chair with my back to the shower stream, with plastic piecnes over my PICC, and a hairdressing cape (like they use when you have your hair died, when you have it rinsed out) which is velcroed tightly around my neck. Any place covered by this cape, I have to was later with just a wash cloth, because I can’t risk getting the PICC line wet.

My stay at the hospital was far from ideal. The various doctors didn’t seem to communication with each other or the nurses, which lead to me not getting any TPN for over 10 nights! Meds were never on time, and two of my meds have to be timed extremely carefully, which caused some withdrawal symptoms. I won’t go into it further, but it was not a good experience.

I could go on and on about all the things that went wrong during my stay. I could probably write a small book. But that is not what I want to talk about. Just as there were a couple of horrible nurses, there were also many fabulous nurses.

My third day there, a nurse came into my room at shift change. Her face lit up and she cried out “Ms. Jan! Is that you?” It was Nurse Kellie. She took care of me at a different hospital several years ago. I instantly recognized her and was so happy to see her. She is one of the great nurses.

Later that shift, she was giving me meds, and I told her, because they didn’t have TPN for me, I was getting a Dextrose drip and I had to try to eat food orally (which is very difficult when you don’t do that often.) I told her how I wished I had some kind of chocolate bar.

She smiled and said, if you could have any kind of chocolate bar, what kind would it be? I replied, oh that is easy. It would be a Kit Kat bar.

The day went on, and eventually it was the end of her 16-hour shift. As she was introducing me to the next shift nurse, she very quietly placed a Kit Kat bar on my hospital table, with the biggest smile. I couldn’t thank her enough. She had gone down to the cafeteria and bought that Kit Kat for me. And I savored every bite of it. That Kit Kat bar was more than a chocolate bar — it let me know that someone cared about me. At that point, I really needed that!

She was my nurse several more times during my stay, which made me glad because not only was she officiant and responsible, I knew how much she cared about me. It makes a huge difference!

And on the day I finally checked out of the hospital, she was just starting a shift and was at the nurses station. She saw them wheeling me out, and ran over, waving goodbye and saying “Goodbye Ms. Jan! I hope the next time I see you, it won’t be in a hospital!”

Nurse Kellie will always be remembered to me at least, as Kit Kat Kellie – the nurse who cared.

My RBC, hemoglobin and hematacrit have been very low for over 8 months now. Having had chemo done twice in the past 2 ½ years easily explains that, but it is very hard to live any kind of life when these three items are so low.

It leaves you tired, exhausted, sick-to-your-stomach, unable to keep food down, and just feeling like you need to sleep 24/7. If you even sit down in a stiff-back chair, you’ll fall asleep. It can also make your blood pressure very low. One day, mine was 74/43! (and yes, I immediately went to the hospital for that.) It isn’t a great quality of life when you spend 20+ hours a day sleeping!

My RBC is 3.04 which is very low. In range is 3.8-5.10.

My hemoglobin is 8.2 which is dangerously low. In range is 11.7-15.5.

My hematacrit is also low. It is 27.4. In range is 35-45.

I have severe anemia, but not iron-deficient anemia that we typically think of. I have no iron deficiency.

I often get pernicous anemia (a lack of vitamins D and B-12,) because I can’t absorb them due to having short bowel syndrome, but I get injections of these daily through my TPN.

My anemia is pure and simple a lack of red blood cells. This often happens after intensive chemo, but mine is not resolving. There is a good chance my bone marrow isn’t producing enough red blood cells, and the ones that are being produced are the wrong shape and size.

My kidney function is less than half what it was 2 weeks ago (which is very scary.)

My Creatinine is very high (much higher than usual) which shows that something is taxing my liver.

There is a medication that can help me. I’d need to get an injection at a hematology center every two weeks, until my blood levels come up. I’ve been trying to get into one and get set up for months. I’ve been there twice already, but they didn’t feel it was “that bad” and wanted to “wait and see.”

They made my next appointment for the end of October! (which is two months from now!) I did a lot of praying and came to the conclusion that I needed to put on my “pleasantly persistent” persona.

I sent a note to them saying I’m not sure I’ll still be here in 2 months for that next appointment, that I’ve already been in the ER on three different occasions and was hospitalized for 15 days all in the past month, that I am weak and shaky, I’m in the bed 18-22 hours per day, and this isn’t much of a life. I reiterated that I need help NOW, not two months from now. I ended it by simply saying “Please help me!”

I think it hit a chord with them, because the very next day, they called and worked me in, did all the labs they needed to do to prove to the insurance company that I did need this insanely expensive treatment, and I’m now set up for my first four treatments!

“Pleasant persistence” is a very powerful attribute.

UPDATE: After my first Pro Crit treatment, I started to feel better. My labs increased a bit. I felt less tired and less fatigued. Now, three months later, I feel like a new person! My RBC, Hemoglobin, and Hematocrit are still low, but not “scary” low anymore.

Being your own advocate (or being the squeaky wheel) is essential in our healthcare system. I’ve always found that the key is to stay pleasant (pleasantly persistent). Yelling, shouting, and threatening don’t tend to get you anywhere (and besides, those attributes are just not in my nature) but if you stay pleasant, yet insistent, I’ve found you can effectively advocate for yourself and get what you need.