First of all – why I decided to publish the following story ...
When I was informed that I probably was identified as a potential match for a patient, I tried to find out more about everything related to this topic than I already had by reading all official brochures and homepages. All these reports are quite relevant, well-informed and objective. I was missing some personal report. Everything else was nearly as interesting to me as a technical instruction…
I´d be pleased if this description of my own personal experience will help one or another to quench his thirst for knowledge (for sure - everyone looking forward to this kind of “operation” will have that).
Everything important concerning the medical facts you will receive from doctors and from the registration agency. Anyhow – that´s not the aim of this report.
Sonnefeld, April 2007
Christine Lösch
P.S. Any questions? Just contact me via e-mail. If any fact is mis-explained (and you are an expert yourself) you are allowed to curse at me...
April 2006
There´s an advertisment in the local daily newspaper telling of a stem cell donor drive which will take place at the local grammar school. A female student suffering from blood cancer was treated successfully – so her classmates agreed to organize a donor drive.
Spontaneously I decide to go there for registration.
28/04/2006
In the afternoon I set out for this school.
There in the hall well instructed students are waiting to help filling out the forms. I´m one of the first to be registered and by now there aren´t so many people around, so immediately three assistants are at hand – awaiting to help me along :-)
At first my particulars get checked. Everyone can give a voluntary donation to support the drive financially. Every identification costs about 50 EUR.
With one (or two) glass tubes in hand I´m passed on to the next station.
There a competent person draws some blood and hands it on into a lab to identify tissue characteristics (HLA-A und HLA-B).
After 20 minutes everything is done and I´m on my way home.
May/ June 2006
I receive my personal „Donor ID-Card“ via mail.
27/09/2006
A thick small parcel from DKMS arrives – a “blood-draw-kit” in a small cardboard box.
The first tests showed that I am probably a potential match for a patient.
To ascertain this, some more tissue characteristics have to be checked.
Again blood is asked to be drawn – as soon as possible. The same day I call my doc to set a date.
02/10/2006
Some more blood is drawn and taken to the post office on its way to the lab.
25/10/2006
A letter from DKMS...
…”because of all the tests already carried out… you are identified as a match for a patient in several tissue characteristics.”
Ooah…it´s getting serious…
“So I ask you to call as soon as possible this free number below…”
I immediately dial the number…fortunately (because it´s quite late in the afternoon) I reach someone – a nice young man. For sure I question him about really everything that´s coming to my mind about the donation. And I´m deeply sorry that I deprived him of his punctually end of work.
* SORRY, MR. ABERT *
Now it´s really serious…this stadium I´m in.
First he asks me, if I´m still at disposal as a donor.
Sure – anything else would be untenable (although I must admit – it´s a strange feeling, if “everything” is suddenly coming closer. I was feeling real queasy. When I already received the first letter from DKMS, I had talked to my family and friends of course. Thanks a lot for your encouraging support – my dear beloved!)
He tells me that it is quite urgent to get stem cells for this patient and offers me three dates from which I can choose (on the whole the last right to decide lies by the hospital…and the very last by the patient who will receive the stem cells).
It is considered to extract bone marrow from the back of the pelvic bone. The method chosen ultimately depends on the treatment decision of the physician in care of the patient.
Operation under general anesthesia – shriek!!
Besides he explains everything exactly detailed what can be read in the official brochures and on official homepages. …and he´s so patiently answering my questions…
Before the extraction (about three weeks before) a preliminary examination is required. It will take about three to four hours and takes place at the hospital where it will be extracted. October 31th is arranged.
Jhip – it´s going on really fast!!
All questions are answered now (since I´ve had received the first letter from DKMS I´d been additionally searching the www for as much answers and reports as possible). Now I´m waiting for more information regarding the investigation. I hope the Klinikum Nord in Nuremberg (which is one to choose from) will be “my” hospital to carry out the extraction, because it´s the nearest to my hometown.
27/10/2006
DKMS confirms the date and hospital where the extraction will take place – November 23rd 2003, Nuremberg.
I also receive a letter to be handed on to my employer in which he gets informed about the forthcoming operation, the timetable and the possibility that DKMS will refund the continued payment of my wages.
The fact that I need to be on leave for seven days seems to be an insurmountable obstacle to the official in charge who´s responable for my release. All this just because there´s no rule or paragraphe for stem cell donation in this damn decree that manages the reasons and length a civil servant is allowed to be released. Three days per year – as if by magic – that´s the limit. (Otherwise I will use my holidays.) He doesn´t dare that continued payment of my wages would be refund…
Doesn´t matter anymore – all worked out well – even though not as planned at this time.
Later more about this…
31/10/2006
Preliminary examination at the Klinikum Nord in Nuremberg
Around 8:45 a.m. I arrive at the hospital. Thanks to a site plan the right office is found soon.
I announce my arrival at the reception. There I get one more questionnaire to fill out.
After a short wait I´m called for blood drawing. This time it´s a mass of tubes (about ten – in different colours and sizes).
Please don´t pin me down on the chronological order – I do my best:
I receive my personal timetable for today and a short instruction of the site plan – so I´m sent off for the ultrasound scan. All organs are getting checked – liver, gallbladder, spleen, kidneys, bladder…the doc tries to explain everything she sees on the screen – everything okay, she tells me.
I must admit, I didn´t discern anything…
As I sit in the waiting-room expecting to receive the report of the medical examination, a middle-aged man sits down next to me. He asks me, whether I´m already recovered and back for a check-up. I reply that I´m glad to come here healthy. So I tell him about the forthcoming donation. He smiles at me saying how pleased he is about that this possibility exists and that there are people who - by using this possibility - offer one great chance to ill persons fighting against Leukemia.
Nearly incidentally he explains what terminal illnesses he is suffering from. Then he shakes my hand and wishes me well – and he thanks me.
I´m deeply touched. What a kind man.
Next station is the ECG – also everything okay.
Then I get my lungs X-rayed.
After that the functioning and the volume of my lungs is tested. This is required because of the general anesthesia during the operation - to calclulate how much medicine they have to use to put me to sleep…
For that you sit in a glass case, on your nose something like a peg and a snorkel-like thing between your teeth. Sitting there on a chair you have to breathe out – under order - different intensivly…breathing in is also allowed ;-) sometimes
Sensors inside the tube measure all required data.
After all these examinations I go back to the ambulance from where I had started my hospital expedition. There I hand on the file with all my collected test results. In exchange for this I get the documents I need at the specialist for anesthesia and for my self-donation of blood.
The doc responsible for anesthesia - young and good looking ;-) – explains to me every detail of how a general anesthesia is carried out, all risks and possibilities. In the end I´m not frightened any longer…nearly…
It really doesn´t seem to be as awful as exspected.
At the station where the self-donation of blood will be done I have a short break to rest so I can eat my sandwich and drink a small bottle of water as I were told.
It´s not a joke. They particularly advise you not to come there with an empty stomach.
Sitting there waiting – there are a lot of friendly people around me again.
The doctor draws a huge bag of my blood – after a hard fight against the veins of my right arm - lucky that I can offer another arm.
It´s about 500 – 800ml, I think.
I will get it back after the extraction for quick recovery. Or if more blood gets lost as calculated during the operation.
Something that doesn´t seem logical: I thought it would be a chance to donate this blood to someone in need if it won´t be necessary to give it back to me. That is not possible – not allowed. If not used within a certain time it has to be destroyed. I don´t have to understand anything…
After my one-day expedition all around and inside the Nuremberg clinic I return to the reception of the ambulance that manages the bone marrow extraction - where I had started from.
There I have a talk to Mrs. Dr. Schäfer-Eckert. She explains to me very very detailed how the examination will be carried out: Two surgeons will use long needles to stab me in my hip-bone from where a mixture of blood and marrow will be sucked out.
The loss inside the bone will be equalized within a few days.
For this patient a bone marrow transplantation is prefered to a stem cell donation because of medical requirement.
At last she hands me a timetable for the day of examination and one more sheet to inform me.
Then she sends me up with a farewell.
04/11/2006
DKMS informs me that the results of all tests turned out to be okay. The extraction will take place at November 23rd – as arranged.
November 2006
A DKMS employee calls me about one week before the arranged date:
The extraction is cancelled. The patient has decided against it. She declares that the patient probably is suffering from a less aggressive type of Leukemia, so he´s in a relatively good condition at the moment and shys away from the risks of a transplantation. For the one receiving the donation the risks are enormous – worst he will die if complications occur. Otherwise the patient possibly is in such a bad condition because of his illness that he isn´t able to undergo the preparing steps (among others: chemotherapy) at the moment.
Nobody knows. Fact is: no pricking into hipbone on November 23rd.
I´m flabbergasted – also feeling a bit relieved I admit (me – the most anesthesia-fearing person on earth).
I also cancel my application for being released from work for seven days.
The lady from DKMS points out to me that a cancellation isn´t unusual. Quite often it is only a delay. In all probability I will be asked for donation in the course of the first quarter of the year 2007.
January 2007
DKMS is calling.
On the part of the patient the donation is now desirable.
Again I can choose from some dates. We arrange March 12th and 13th.
Nothing new so far. But – this time not an extraction of bone marrow is planned to be done. The donation will be carried out by a procedure called peripheral blood stem cell (PBSC) apheresis.
During the procedure, the donor’s blood is drawn from a vein, and a machine skims the stem cells. No operation is involved J (how nice!!). During one session (takes up to four to six hours) your whole blood flows through the machine twice. If not enough cells could be harvested – it will take one more session on the next day to complete.
Before donating a protein (G-CSF) with hormones is given to you for five days, which will lure stem cells out of the bone marrow into the blood stream.
19/01/2007
Once more I receive a letter from DKMS.
The arrangemant for the donation in March gets confirmed. Again I´m asked to visit my doc to get some more blood drawn to be tested.
As in October I also get a letter to hand on to my employer.
24/01/2007 (?)
Visit at my doctor´s – four tubes of blood are drawn to be sent to the lab.
20/02/2007
News from DKMS – the blood examination confirms that everything is okay. The donation will take place as arranged.
During the call the timetable of the phase of preparation is explained to me, also how to inject the G-CSF and what kind of side effects can occur (flu-like symptoms, headache, tiredness, …).
23/02/2007
I receive a thick envelope right from the hospital. Inside there are the syringe kits (G-CSF) for the time of preparation (beginning to inject five days before donation - on March 8th in the morning), desinfectant, painkillers (Paracetamol in Germany, otherwise Tylenol and Advil), also an agreement for donation and some more information sheets.
It seems to me that I gave the impression of being an inspiring confidence person when I had visited the clinic in October 2006 for examination. At any rate I´m not instructed more detailed how to inject.
As being experienced in using injections against blood coagulation after some operations some years before, I do not doubt – in contrast to the people surrounding me ;-)
For sure it is not to everybody´s taste to assemble the syringe kit. But already the second time it works out well with the injection building kit :-)
07/03/2007
I call the hospital – as a precaution – to ask if the agreed date is still valid to start injecting the next morning.
They give me the go-ahead.
08/03/2007
6:15 a.m.
The first injection.
Everything works out better than expected. Even if first I´m a bit nervous with how to assemble the syringe kit and how to mix the G-CSF solution.
Now I´m curiously waiting for the first side effects to occur.
Late in the evening and during the night I suffer from headache – what forces me into taking some pain killer.
Injecting works out well in the evening again.
09/03/2007
From morning on I suffer from headache again – and in addition from a pulsating dragging pain in my back. I don´t feel very well in general.
Because all this (not really) pain distracts me from my office work, I take one more pill so I don´t feel any pain.
Injections in the morning and in the evening = everything OK
10 and 11/03/2007
I´m not a fan of taking medicine so I try to leave out the pain relievers. And it works out well.
On the whole I´m really, really tired (usually my body doesn´t even know this state ;-) ). My hipbone is still pulsating and dragging.
All that can´t keep me from working on Saturday – most important, not delayable ;-) - preparing a whole van full of firewood, taking it home and unloading it.
It just feels a bit “flu-like”. Otherwise everything is alright.
The only thing according to the injections that gets on my nerves is the fact that I am on the way nearly all the time. I´m hardly at the same place same time one day after another. So I have to take the injection kits with me for I´m told to inject exactly every twelve hours. Even this is to be managed.
Sunday I just feel shattered. Besides I have problems with my eyesight and I´m not keen about anything.
12/03/2007
D-Day
My boyfriend lives in Nuremberg because of his job. So I have stayed there to reach the hospital in time today – quite a relief for me always being late by nature ;-)
6:15 a.m. – I inject once again, have my breakfast and easy-going set out for the hospital where I´m told to arrive at 9:00 a.m..
I have a walk, go by tram and bus – and arrive at 8:45 a.m. (I´m proud) at the ward where I´m awaited already.
First of all I get two tabs of Calcium in a glass of water. It is to avoid muscle convulsion while being plugged in the apheresis machine. During this process every donor receives medicine against blood coagulation what in a kind absorbs the Calcium normally circulating in the blood stream. …it doesn´t seem to be advantageously having muscle convulsion with steel needles stuck in both arms…
Before the apheresis you are recommended to drink sufficiently. Annoying thing that you are plugged in this machine for about four hours and maybe more – unable to get off to the toilet.
The doc responsible for me being plugged in the machine already comes in. Immediately he starts searching for a vein that fits…seems not to be very clear in my case…in the end he succeeds…
In the inner side of the right arm a needle is put to take the blood out of the blood stream into the circulating system of the apheresis machine. So my right arm is condemned to be placed on a pillow for all the time.
The second needle leading my blood back from the machine into my body is put in the left arm near the wrist.
It didn´t hurt. Really.
The “tap” on the left wrist is used to draw some more tubes of blood to check for example if enough stem cells are present in the blood to be skimmed.
“My” nurse sets the machine going. Original I had planned to read some book or magazine while waiting. But my “tap”-vein doesn´t work as desired. Not enough blood flows out of the vein to get the machine work well. So I have to squeeze a softball all the time to accelerate the blood flow and intensify the quantity – for about four hours. If I stop the machine starts to alert and the nurse has to get the machine going again.
The stream of time seems to become slower and slower…
I could watch TV, but I don´t like to. I would like to read, but I can´t (because of the pumping right hand and my streched arm). Talking to someone is possible, but only if the machine alerts and “my” nurse has to intervene.
After my blood has circulated twice and stem cells and plasma are collected I get plugged off the machine.
Now I have to wait for the donated blood being analyzed in the lab and hope that enough stem cells were “harvested.”
I decide to wait outside in the park – it´s a wonderful sunny day.
One hour later the results: Too bad :-( not enough stem cells today :-(
So I get one more ration of G-CSF syringes (one this evening – one tomorrow morning) and two tablets of Potassium (which gets “washed out” during the apheresis) to take in the evening.
After I got all my instructions for today and the new date for the second go next morning - I head back tired.
Back home.
For the rest of the day I rest on the sofa.
13/03/2007
...once again...
Same procedure as yesterday.
But fortunately this time I join someone´s company. There´s a very nice and talkative man sitting next to me (doing his first donation) – and today´s nurse is really entertaining, pleasant and cheerful (admirable how this is possible – while working in this ward. In this clinic the room for stem cell donation is integrated in the ward treating the patients suffering from cancer. For me as a layman some kind of depressing – but also helping to wipe off the last doubts.)
Time passes really quick today. Also my blood likes to run better now. I only get a tickling in my fingertips and around my nose and mouth today. Super-nurse explains that these are preliminary symptoms of a muscle convulsion. So she gives me some Calcium (an infusion gets plugged in the needle returning my blood) – after that everything gets back to normal again.
Because everything works out well today I finish earlier than yesterday (or rather the machine finishes earlier).
I have to wait for the blood analysis again…
…today enough stem cells could be collected. I´m glad!
So I get one more questionnaire and the instruction to get some more blood drawn and analyzed about four weeks after the donation. Then I get off and head back home – to my sofa.
I do not have any head-, back- or hipbone-ache.
14/03/2007
DKMS calls.
„My“ official in charge asks how I´m feeling. Everything´s alright, I say. Except the visual disorder I´m suffering from since one day before the donation. No-one is able to explain to me where it comes from or how it can be attented (neither the eye specialist, my family doctor, nor DKMS or the specialists at the clinic in Nuremberg ever heard this before). Maybe there´s no correlation between donation and visual disorder, too.
In the meantime (16.04.07) the problem nearly disappeared. It only appears when I´m tired and at the end “of a long day”,
Now she tells me about the patient who will receive/ has received the donation. He is aged 53 and comes from France. He is suffering from Chronic Myelogenous Leukemia (CML).
CML is rare and gradually becomes more aggressive over time, usually after six years. It affects a small percentage of children and adults over 50.
Three months after the transplantation DKMS will inform me, how he´s doing.
I wish him well and that he gets the power and endurance he needs during this hard and crucial period of time!
For the next two years I will be reserved as a potential donor for this patient, if he needs more stem cells again.
Also if it´s not so important and really not the use of giving a donation – I will never get to know the man. That is because of French law which wants to save both sides taking part in an transplantation. So it is not allowed that patient and donor get in contact with each other – even if both of them want to. It doesn´t matter how much time lies between. What´s left to me is an anonymous letter I can write. This I have to send to DKMS what will hand it on to the French transplantation organisation. The patient will receive it from there. At least something – even if restricted.
...to be continued
I´d like to tell about something I didn´t had expected in this huge clinic where I first of all thought to be only a small piece of the daily business of the employees:
Everyone (doctors, assistants, nurses, male nurses, … - if at the X-rays, the ECG, the lungs check and after all at the apheresis) welcomed me and treated me friendly and courteously all the time. Nearly everyone I had to do with was interested in how I had registered as a donor. And how they are pleased that there are people who are at disposal for a donation.
All that almost embarrased me. But it also feels good.
I am convinced that all people being part of this are working engaged and joyful (as far as “joyful” is possible at a ward like this).
