It’s my 46th birthday today! About time for an update 😉
- I still have a portion of my old immune system.
- We are now reducing the immunosupression medication – hoping that this will make the new immune system from the donor kill the old one.
- Cooperation between Rikshospitalet and Fred Hutch is great.
- I am feeling better than in a long time – a lot better than before the transplant. The pain in my belly is manageable, I don’t have to think about it all the time.
- I had to have a bone marrow biopsy and a blood transfusion.
- We had a fantastic break during our kids’ winter holiday.
- The snow has melted, so it’s possible to go for bicycle rides again. This makes exercising so much more fun!
Blood analysis performed at the end of December showed that approximately 14% of my immune cells were still mine (called ‘host’). This is called chimerism, after the figure Chimera from greek mythology being a lion and a goat and a snake. My immune system is donor and host.
By reducing the immunosuppression medication we hope that the new immune system from the donor will take over completely. The goal is 100% donor cells, the sooner the better!
In late January/the beginning of February my blood values dropped. These results came in while I had a consultation with my hematologist. He had to make sure that the bone marrow was still working. ”OK I’ll take a bone marrow biopsy”, he said. I had never had one so I must admit I got a little anxious. Quite a few people in Seattle had told me that it was very painful.
It wasn’t! Or, my Doc is just extremely good at it. It must look a little brutal, a tall and strong man using quite some power to stick a hole in my breast bone. However, this wasn’t brutal at all, and before I realized it the bone marrow was put on miscroscope slides (see featuring picture on the top of this post).
He called me the same afternoon already to tell me that my bone marrow was ‘working like a horse’, so nothing was wrong with it. He then told me that there must have been blood loss. I must have been bleeding from my intestines. This was true- I just hadn’t paid much attention to it. Next time I will 🙂
The day after I got a blood transfusion. Two bags. And all blood values had stabilized the next week. And this was a turning point for me starting to feel better.
2015-02-05: Blood transfusion
For a long time it was uncertain if I could go on this holiday. My hematologist said it was ok to go. He also certified a list of medications I was taking, in case customs would question the content of my luggage.
On February 16th we flew to Fuerteventura, and we had a very good time. The weather was nice and windy, not too hot.
Great trip to Fuerteventura!
We had rented bicycles. In the beginning of the week we were down there I could stop taking one of the medications I had been taking after the enteroscopy. During the next few days I started feeling remarkedly better. During the last day, I even cycled up to the Lighthouse, a 14 km long trip with a total of 300m elevation. The last bit of this trip is 100m straight up.
Feeling very accomplished after a bicycle trip up to the Lighthouse on Fuerteventura 🙂
Since the wonderful vacation my health has been improving. I was allowed to stop taking two more drugs. So now the only immunosuppressant is the one called tacrolimus (Prograf).
Since last weekend, the snow has melted so much that I have been able to ride my bicycle outside again. In addition, I do my work-out in our garage. Last weekend, four members of our family were working out together.
I will have another ‘chimerism work-up’, probably 26th and 27th of March. Another round with blood tests, stool tests, enteroscopy/colonoscopy with biopsies, and bone marrow biopsy. I am actually looking forward to it. It will give results on how the new immune system is doing.