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Still CARPE DIEM

 

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Bergit Korschan-Kuhle

MDS-patient Germany, MDS alliance, EUPATI fellow

5 October 2017

Four years ago I wrote a column on blood transfusions entitled “Carpe diem”, published in the former MDS-Beacon, a website for patients and physicians on Myelodysplastic Syndromes. This website is no longer active, but the blood transfusion subject is of further topicality, especially sensitive and important for the stakes which it represents. Many MDS-patients are blood-junkeys. In nicer words due to lacking therapy options, blood transfusions are their only possibility to become long-term survivors, unless they undergo a transplant with the chance of being cured.

I have been transfusion dependent for 10 years now. I was able to a­chieve trans­fu­sion independence for one year in 2008 with the help of erythro­poietin (EPO) and again for nine months in 2009 with the help of valproic acid (Depakene). After this short, transient response, I was never able to achieve trans­fu­sion independence again, neither with an ex­per­i­mental drug in a clinical trial nor with any other drug currently on the market. The Luspatercept trial to treat anemia I have been enrolled in since 2014 was another try. In the beginning I needed less blood, but after a few months I returned to my former interval of 10-14 days. The physicians and I, we don’t dare to put me off the trial, because my blood counts and my transfusion interval are stable on a low level, although I could either be on luspatercept or the placebo. Nobody knows, so we just leave it that way.

My transfusion dependency has been part of my identity for so many years. To need blood every 10 to 14 days is rather frequent and severely limits my mobility. Like so many cancer patients I am on a short leash of my hospital and this situation will not improve.

From the patient perspective I am a real blood transfusion expert. I know all things, observe all things, read all things about it, including the experience of transfusion reaction – fortunately only once - and the development of antibodies limiting potential donors, resulting in a longer waiting period for the blood bank to “brew” my special blood. After over 500 units of red blood I can enumerate all increasing physical and mental stress issues patients like me have to suffer from during the days prior to another transfusion:

Feeling the desperate need for blood like a drug addict, particularly hard to endure over the weekend, waiting for Monday morning to get relieved finally after another 5-6 hours of waiting through all necessary procedures on the out-patient ward and blood-bank.

I know all of it, frequently sharing transfusion experience with waiting fellow sufferers slouching or slumped in their ward chairs. Just as much as I have routine in all kinds of debates on the topic in internet forums. There are varied spheres of experience around the issue: the significance of the hemoglobin level, the quality of your veins or port-system, the ferritin level, the hope that there are no emergencies in the hospital or in the street prolonging the waiting period endlessly, last not least the mood of the medical staff etc.

The most important question though is always that of the transfusion threshold. As a lethargic patient would put it: “Is my hemoglobin level low enough to require blood, so that I will feel better at least tomorrow to do part of my daily chore?”

Three conditions to be fulfilled:

  1. The HGB level, which - according to transfusion policy – should not be above 8,0 g/dl. I’ve been told that in Greece for instance, due to the many Thalassemia patients requiring blood, the transfusion threshold is 7,0 g/dl.
  2. The symptoms should be enough to tell the patient is severely anemic (“the paler the better”).
  3. The inner conviction of the physician based on 1. and 2., whether the patient in front of him really is in need of a transfusion. In fact the physician has a broad discretionary power to decide. Sometimes it is only about a few tenths between e.g. HGB 8,0 and 8,4 that would mean to stay in the out-patient ward for a unit of blood or to go home again. However, the hemoglobin value could easily decline 0,3 g/dl or even more within 24 hours, so the very next day the patient would be back to the clinic anyway. Only after another unnecessary uncomfortable time at home, he/she would have been better to have remained in the hospital to receive his pint or two.

It happens once in a while that patients complain of their physicians sticking to the 8,0 d/gl threshold. In most of the cases, though, anemia symptoms, even if they are not clearly visible, plus a trustful conversation between the physician and the patient, play the major role in the pro-transfusion decision, especially when patients are well-known long-term recipients. These patients know how to judge their general condition and - out of experience - often are capable to estimate their own HGB level almost accurately. I would always advise every transfusion-dependent patient who is feeling badly fatigued and short of breath to assert himself to get his therapy.

There are patients with heart problems who need a transfusion even earlier. For me it is standard to receive blood below HGB 9,0 g/dl, more urgently below 8,5 g/dl. My physicians and I have negotiated my individual threshold on the basis of my long transfusion career.

Definitely there are reasons to be cautious with the transfusion therapy. Bad transfusion reactions, iron overload of the inner vital organs, including the bone marrow and development of antibodies are side-effects to cope with the more frequent erythrocyte concentrates will be administered. Patients, however, don’t wish to listen to these essential statements or warnings.

They want to feel better and they do feel better after being transfused. They want the “Carpe diem” and don’t want to be concerned of ailments in the hopefully remote future.

I admit that after more than 500 units of foreign blood I do not benefit from the therapy as I have in the beginning, when I rose like a phoenix from the ashes after two bags of blood. I don’t manage to walk stairs and even small slopes easily, even when I am well transfused, nor can I walk for more than half an hour, or concentrate more than two hours in a row. Owing to lack of strength and exercise my body has become quite weak and worn down after a 12 years’ battle against MDS. However, if I compare my physical and mental capacity before and after a transfusion, I still keep gaining a lot of Quality of Life by getting regularly transfused.

After 10 years of blood transfusions my side-effects are still manageable. I pray that I will not develop further antibodies too soon and I am very compliant, when it comes to iron chelation.

Being aware of all potential complications my view of the topic has not essentially changed in the last four years.

I am still a warm supporter of the 'Carpe-diem-transfusion-management'. I don’t see any alternative to this policy, as sustaining Quality of Life means the highest value to us patients.

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