The Reset Button of my Life – My Recovery Diary 2017 - Part 10
Land Ahoy!
August 22nd 2016. We arrive in Venice by water. In the middle you can see the St. Mark's Campanile. The building in front of it is the Doge's Palace.
National Library, St. Mark's Campanile and Doge's Palace. View from the water. 08/22/2016
In front of the Basilika di San Marco, Piazza San Marco, Venice, Italy. August 23rd 2016. I planned on publishing a post on Steemit during that time, but life got in between and I had other priorities.
This article is also available in German.
Dieser Artikel ist auch in Deutsch verfügbar.
The memories of my sailing trip in August 2016 are limited to the above photos now.
Very intense events the past four days:
Today, Saturday januray 21st 2017. 4 days to stem cell transplantation.
University Clinic Carl-Gustav Carus, Dresden.
Last Tuesday, Day-8, as planned, my wife Sabine took me to the clinic in Dresden. I was admitted to the bone marrow- and stem cell transplant ward. More about it here.
Wednesday, January 18th 2017, Day-7. In the morning I croak like a raven. My vocal chords are coated and I have to cough. Hopefully it won't develop into a serious cold because that would result in cancelling everything. I want to follow through with this though! Other than that my day is packed with appointments (and wait times): pulmonary function test, physical therapy, breathing exercise, bone marrow puncture ( again ) and an appointment with the oral surgeon for a follow-up. In between I barely found time to eat or even write. Some people really think it is boring in the hospital.
Thursday, January 19th 2017, Day-6. I'm writing Part 9 of my recovery diary during the night and publish in the morning. In the morning as I weigh myself I notice I have gained a few kilos. That is great in my situation. Starting today I will be conditioned.
Let me explain: On Wednesday, January 25th 2017 I am undergoing a stem cell transplant which will save my life (Day ZERO). Luckily a matching and voluntary donor was found. He is male, lives in Germany and weighs 88kg. I'm not allowed to know more about him due to privacy policies, but it doesn't matter. Essential is that the stem cells match. And the do. 100%. I am a real "Sunday child". You can check that: *01/03/1960.
Blood Cells. Left to right: Erythrocyte, Thrombocyte and Leukocyte. Source: Wikipedia License: Public Domain
The big Update
However, my hematopoietic stem cells, no matter if they are healthy or mutant, have to go.
Only then, will the transferred strange stem cells have a chance to grow into my bone marrow and start creating a new hematopoietic- and immune system.
This is why I am receiving chemo intravenously since Thursday, January 19th. They start off with a small dose, but it will be increased in the next few days. The goal is to kill my own stem cells completely. This is going to be hard. That's also why I'm in the isolation ward. I won't have any immune system to protect me from germs, no protecting mucous membrane and I will suffer from nausea and loss of appetite. I will be in pain and loose hair. The last thing is the lesser of two evils. This unavoidable preparation will last until January 24th and is called conditioning. A nice word for a enormous torture.
Chemo Therapy smooth Start
Even after a successful stem cell transplant it's going to take at least 14 days for the new immune system to start its job. Please be patient, if I have to take longer writing breaks.
The inserting of the tube through my jugular vein to right in front of my heart chamber is being monitored with this Ultrasound device.
On the evening of this same day I am also getting a venous catheter done. It's a small tube which is inserted through the jugular vein to right outside the heart chamber. Right by the heart chamber is where these aggressive and strong medications arrive through that tube and mix into your blood stream. On the outside this venous catheters have a few connections for IVs or blood withdrawals without the needle poking you each time.
The venous catheter has a few connectors. This is the connector to my jugular vein only protected by a clear tape.
Friday, January 20th 2017, 4 days to stem cell transplantation. I am being woken up at 7 am. Blood Withdrawal. This time through the venous catheter. How pleasant.
Blood Withdrawal from the Venous Catheter. No poking.
After refreshing in the bathroom I'm having breakfast. I notice that my mouth is opening a bit more now. Great! It can fit even more now. I'm gonna take advantage of that since I need strengths for the upcoming weeks. I ask the hostess to bring me 2 more slices of bread and open up a can of turkey meat which I brought. At 10 am the physical therapist, Nurse Christine, comes to pick me up to go train with me. They have a small gym here with a Stepper, bicycle ergometer and a towing rope unit which Christine uses to train my arm and leg muscles. Back then in the gym I never liked these, but with Christine's guidance and motivation I do. I now have a personal trainer :)
At 11am I surf the web for a bit. Anything new on Steemit and Facebook? Well, next thing I know a nurse pops up next to me. He is supposed to pick me up and take me to building 27 for my heart ultrasound and EKG. We just did this, but oh well. Unfortunately, I have to wait for half an hour until it's my turn. EKG turns out just fine, but the ultrasound shows that my heart muscle is slightly swollen. Probably due to me high blood pressure. This is not very concerning and under the circumstances not my construction site. I walk back to building 66.
Lunch. I choose broiled fish with mustard sauce and potatoes along with fresh fruit. I improve the sauce with left over butter from breakfast.
Chemo Therapy: Busulfan in 0.9% sodium chloride
After lunch I receive my IVs. Well, since I have a central venous line catheter it has to serve its purpose. First off, 106 ml fludarabine, the same, relatively gentle method which I received yesterday. After that, 515 ml Busulfan, this has to be the strong stuff. I still take it like a champ. I've read somewhere that the side effects don't occur until a couple days later. Afterwards I get some electrolytes flushed through my system while the nurse is preparing 2 doses of concentrated erythrocytes and Dr. Krueger does a cross match. The early afternoon passes.
At 3:30pm my wife Sabine visits. We have to tell each other a lot this afternoon which is why I'm taking a break from writing…
A little "hello" from home. View of our back porch.
This morning Sabine sent me some photos via Whats App. I don't want to withhold them from you: Germany- a Winter Fairy Tale
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:
- Part 9: Russian roulette - decision for life
- Part 8: Living with MDS - I just wish for more time...
- Part 7: What is Steemit!? - 33th wedding anniversary.
- Part 6: Club Nautique - The wireless mouse on the operating table.
- Part 5: The sea calls! - It goes to the South!
- Part 4: Tests, anticipation and the valley of dark shadows.
- Part 3: The 72 Hours Rule - Finally Home.
- Part 2: "By the Wind" - Celebrate a birthday in the hospital.
- Part 1: In the isolation ward of the hematology/oncology. - What's actually happening in my body?
Hallo Thomas!
freut mich zu lesen, dass man den passenden Spender für Dich finden konnte! Deine Geschichte macht allen Betroffenen Mut und gibt mir als potentieller Spender (bei DKMS eingeschrieben) die Gewissheit, das Richtige zu tun und vielleicht irgendwann mal ein Leben retten zu dürfen. Ich wünsche Dir noch weiter eine gute Genesung und freue mich auf Deine zukünftigen Posts voller positiver Energie!
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