Month: October 2017

Before I left the hospital they removed the PICC (peripherally inserted central catheter), that was placed on the second day in the Spaarne hospital. This catheter has been in my body since the 4th of August, but it was really nice to have since they could attach the IV to this line, as well as get blood for testing. Having the line saved me from having a lot of needle pricks. I didn’t feel anything when the line was removed. No longer having these dangling lines sticking out of my arm, and not having to wrap my arm in plastic before showering feels liberating.

Today I was released from the hospital. We packed up all my stuff, and after having spent 24 days in the hematology department, I can finally go home. For some weird reason, my skin tone is relatively dark as you can see in the picture. With this complexion, it appears as if I spent the last month in Benidorm on the beach instead of locked in a hospital ward. The doctors told me that my skin color would likely return to normal soon. I am still excessively exhausted, so my messages are short, but I am happy to be home again.

Together with the nurses we arranged for Thomas to be able to sleep over. They wheeled in a second bed and Thomas and me spend an evening, night and morning together. We had a great time, it was definitely worth the extra energy it cost.

I haven’t had a fever since I wrote about it on day +14.
The white blood cell counts are what matter for discharge from the hospital. The threshold for all types of white blood cells is 1.0 (1000 cells/mcL), my level has grown to 1.3. Apart from the total amount of white blood cells they also look at the amount of neutrophils. White blood cells can be subdivided into neutrophils, eosinophils, basophils, lymphocytes, and monocytes. The neutrophils are the first responders to attack new bacteria or fungi. That is why their level is important; they pretty much do the work of the antibiotics and anti-fungus medicines.Their level has to be at least 0.5 before discharge. Today my level was 0.46, reason enough for the doctors to believe that later today it will surpass 0.5. They have stopped my antibiotics and anti-fungals.
If all continues to go well, and I do not develop a new fever I can go home tomorrow.

This morning I again woke up with fever. Later in the morning I was sent for a thorax X-ray, but nothing was found. The fever also disappeared after a few hours. I am regularly taking paracetamol, which in addition to reducing pain also reduces fever. Perhaps that’s why I have fever in the mornings (they give me the last paracetamol at 22h), and for the rest of the day maybe the fever is suppressed by paracetamol (they give them at 6h, 12h, 17h and 22h). If I again wake up with a fever tomorrow I might be sent for a thorax CT and bronchoscopy, as a lung bacteria or fungus could be the cause). Let’s see what will happen tomorrow, I am also curious about the blood results of tomorrow’s lab.

Today I woke up with a fever and I had serious tummy ache. Luckily the fever went away after a few hours and the tummy ache got a lot more bearable after I was given 10mg of OxyContin (an opioid painkiller). My hair has started falling out again so I asked my parents who were visiting to use my shaver to remove the spotty parts that hadn’t fallen out yet. My blood values were also measured and both the red and white blood cell levels showed an increase (the platelets were still low), so this means that my body has started to climb out of the dip. Hopefully it won’t take much longer. After three weeks here I am getting fed up.

I have forgotten how many days have passed since my stem cells were introduced, maybe it is day 11? I have to ask one of the nurses. I developed a lot very localized pain in my colon on Saturday morning, with a 38.8C fever. They took blood for blood cultures, and started me on a potent broad spectrum antibiotic. To suppress the pain they also connect me to a continuous morphine pump. Today I am feeling a bit better, I have been out of bed to walk a few rounds over the department, and the tummy pain is less. The last days I have been extremely tired, and subdued. I spent most of the days either half or fully asleep in bed. I asked the doctor to stop the morphine this morning and even though my pain is not yet completely gone it is much less than before. As a consequence of stopping the morphine, I don’t feel so drowsy anymore. Hopefully soon my blood values will rise again.

My blood counts have dropped, my platelet count is now 4 and the normal range is 150-400 (in some arbitrary units) and my hemoglobin count is 5.3 and the normal range is 14-17 g/dl. My counts are so low, that I am getting a bag of donor platelets and three bags of red blood cells. These transfusions will hopefully make me a bit more energetic and the platelets will make my blood clot again (I noticed that there are small hemorrhages on my skin and blood in my nose).
Together with the platelet and the red blood cell counts, the white blood cell count is extremely low (they report <0.1), which means that I am very susceptible for infections. White blood cells can’t be transfused from a donor, these would recognize the cells in my body as foreign and attack them. To minimize the risk of an infection, I am given many antibiotics and anti fungals. For the rest I am having tummy ache and generally just don’t feel great, but it is more than bearable. Today Thomas and Nils came over for a visit, but Thomas was complaining about tummy pain and Nils sneezed, so unfortunately they quickly had to leave again. It is better to be safe than sorry as an infection, when uncontrollable, can be fatal.

The past weekend has been mostly nice. Adrienne and the kids stayed at a friends house here in Amsterdam this weekend and they visited me every day. At times when they enjoyed the playgrounds and were playing in ‘kinderstad’, I took my much needed rest. It is nice that the kids don’t find visiting is boring. My parents also visited on Sunday which was great. I understand that Amsterdam is far away, I am grateful that people happily take the time to travel here.

They started me on the antibiotic ‘amoxicilline’ after they administered my stem cells. I had an allergic reaction to this and my torso and groin developed a rash and started itching. They switched medication on Saturday and the rashes and itchiness have reduced, improving my sleep.
I have officially entered ‘the dip’ today as my immune system is virtually non-existent. Next to the white blood cells, the number of red blood cells and platelets have dropped as well. As a result of the low amount of thrombocytes, I am bleeding more quickly. Everyday activities are extremely exhausting at times. This morning I even had to take a rest in between brushing my teeth and having a shower. Some parts of the day I feel ok, and at others I have tummy ache and today I had to throw up. It seems unpredictable. It is all part of this treatment and I just have to ride it out.

Today was Friday the thirteenth, luckily I am not superstitious. It was a relatively good day. I didn’t feel nauseous anymore. My mouth is still hurting and I am very tired, but nonetheless it was a nice day. Adrienne and the kids visited, and they had a nice time. Together with Adrienne the played in Kinderstad. When I was in the neurology ward I accompanied them. Of course now I can’t leave the hematology ward, and I also needed the time alone to recover from the family‘s energetic presence.