The Reset Button of my Life – My Recovery Diary 2017 - Part 8

germansailor (70)in #life • 7 years ago

Living with MDS.

Our lodging in the mountains: Italy, Tuscany, Pescia. 43°57'21.6"N 10°42'14.1"E.

Thursday, August 11th 2016. Since my appointment with Prof. Dr. Platzbecker yesterday I know have a rough idea of the treatment procedures. I also obtained more knowledge about the illness MDS:

To push back the sick cells and blasts, we will start an outpatient treatment on August 29th 2016 with the medication Vidaza. Four to six cycles with a duration of 4 weeks each. Paralell, they are looking for a stem cell donor within the DKMS (the German stem cell database).

This article is also available in German.
Dieser Artikel ist auch in Deutsch verfügbar.

Symptomatic and preventative measures

My blood count is going to be monitored very well in the future. This means frequent blood withdrawals, from which they measure the following blood count:

You can get used to this. Blood withdrawals are becoming a routine.

Erythrocytes. When my hemoglobin count lowers to under 5.0 they are giving me concentrated erythrocytes through an IV.

Thrombocytes. In the future when my levels go under a certain count or before a medical procedure I will receive concentrated thrombocytes.

Leukocytes. Those are the fighting force. Police and Firemen of your immune system. I have very few of those. I cannot receive those from a donor though (unless it was my twin). Strange leukocytes will cause your body to fight a war with a fatal aftermath.

This is why my immune system has to be supported with medications which means taking antibiotics daily (mornings and evenings). Only for prevention. Furthermore pills for yeast infections. I am also receiving bottles of a very nasty tasting liquid. I am supposed to use it to rinse my mouth after every meal or at least after dinner. I feel like I have AIDS. Soothing: MDS is not contagious.

Finally Vacation

Friday, August 12th 2016. We are packing our suitcases and go to bed early.
Saturday, August 13th 2016. At 4 am the alarm goes off. Sabine and I are going to Gera first which is where we are meeting up with Carmen, Carsten, Grit and Ulf. 6:00 am the journey begins. We are sitting in Carsten’s VW van. Off to the South, follow the sun. We are planning on arriving in Pescia, Tuscany in the late afternoon.

Tuscany, Italy. Pictures of our first vacation week from August 13th – August 19th 2016.

Our vacation quarters. Two story house, sunny back porch and a breathtaking view.

A Pool in an olive grove

Our Vacation Quarters: view from Pool

I love dogs. The German Shepard Mix from our landlords likes me

Sabine and I in Pisa.

Florence, Loggia dei Lanzi. Whoever owned lordship had to have the biggest tower :)

Sun ripened grapes

Today is Monday, January 16th 2017. (9 days to stem cell transplantation.)

I have to be in the outpatient clinic by 8am. On the agenda today is the routinely blood withdrawal. Afterwards I will receive my daily antibiotics IV. At 11:30am I have a consultation with Dr. Herbst. She wants to see me before I go to the Clinic in Dresden for 6 weeks.

My daily antibiotics IV

The past weekend was very fulfilling for me. On Saturday (01/14) I have celebrated my 33rd wedding anniversary with my wife Sabine. My daughter Julia and my granddaughter Lotta were visitng the whole weekend ( Friday to Sunday ). I am happy. I have lost my fear of MDS…

Sleigh ride with Lotta

Here we come

*Somewhere deep down I’m still a child*

I just wish for more time to life…

With this Recovery Diary I want to not only write about my progress (or regress). Most importantly, I want to reassure those who are in a similar situation. No matter if it is yourself, a member of your family or a friend who is affected.

To be continued...

You can find the previous articles here: