Care of heart transplant patients at the DHZC
Heart transplantation is often the best possible treatment alternative for very serious, irreversible heart disease, combined with the possibility of a high quality of life in the long term. At the same time, it is a serious operation that can lead to considerable physical and emotional stress and permanently change the patient's everyday life. Transplant patients must take medication for the rest of their lives and be closely monitored medically.
Our medical and nursing experts in the transplant outpatient clinic at the DHZC are permanent contacts for heart transplant patients at the DHZC - in addition to the care provided by general practitioners and specialists.
Transplant outpatient clinic
Patients from all over Germany who have received a donor heart and/or a donor lung at the DHZC are cared for in our ‘University Outpatient Clinic for Transplantation Medicine’. Even if you have been transplanted at another centre, you are welcome to contact us. We will contact you in consultation with your transplant centre.
The specialised doctors in our outpatient clinic will be happy to answer any questions you and your external doctors may have about the transplant.
We will arrange regular examination appointments with you to carefully monitor your state of health, in particular the function of the new organ. In addition to the consultation with the doctor, ECG and echocardiography examinations will be carried out. Your blood will also be tested for infections in the laboratory . In addition, our experienced doctors will check for possible concomitant diseases during the examinations.
Immediately after the transplant, patients are initially examined more frequently in the outpatient clinic. Over time, however, the likelihood of rejection reactions decreases. The doses of medication can be reduced and side effects (such as infections) occur less frequently. After a year, one visit per quarter or every six months is therefore usually sufficient. In the meantime, you will be advised on the laboratory results by telephone.
Heike Bettmann is the head nurse at the transplant outpatient clinic.
Accessibility of the outpatient clinic:
T: 030-4593-2141, 030-4593-2140
F: 030-4593-2143
tx-ambulanz@dhzc-charite.de
Heike Bettmann is the head nurse at the transplant outpatient clinic.
Accessibility of the outpatient clinic:
T: 030-4593-2141, 030-4593-2140
F: 030-4593-2143
tx-ambulanz@dhzc-charite.de
Immunosuppression after transplantation
After the transplant, patients have to take medication (so-called immunosuppressants) for the rest of their lives to weaken their immune system in order to protect the transplanted organ from rejection. Correct intake is vital. That is why our transplant physicians regularly determine the blood levels of the immunosuppressants and analyse the results. On this basis, we can adjust the dosage of the medication if necessary.
The transplant outpatient clinic is also available to help you with acute problems . Please contact us if you have a fever, rashes or other intolerances or if you need an operation at short notice. You can also seek advice and support from the doctor on duty at the transplant centre outside of consultation hours in an emergency.
If you are admitted to another hospital after your transplant, the doctors treating you should contact us so that we can provide you with transplant-related medical support. The transplant outpatient clinic can be contacted as follows:
T: +49 30 4593 2141, +49 30 4593 2140
F: +49 30 4593 2143
Enquiries about heart transplantation
At the DHZC, patients receive comprehensive care before and after a heart transplant in our ‘University Outpatient Clinic for Transplantation Medicine’. The first contact with us is usually made by your attending physician. The listing process begins with the enquiry. After a detailed diagnosis, we plan a possible listing together. You can find out more on the page ‘Before heart transplantation’.
For the first step, we ask you to provide the following data, information and findings:
- Registration form
- Doctor's letter
- Details of the diagnosis
- Information on cardiac function
- Resilience
- Concomitant diseases
- Other relevant findings
This data is important for us to be able to assess the type and urgency of the transplant. If necessary, we will ask you for further information. The documents can be submitted by e-mail, fax or post.
We will then arrange an appointment with you for your first consultation. You will need the following documents for this outpatient appointment:
- Referral
- Health card (insurance card)
- Vaccination card
- Absolutely necessary: Your medication plan (standardised medication plan in accordance with § 31a of SGB V, available from your family doctor)
Optional (if available):
- Findings of the last cardiac catheterisation or cardiac MRI examination (on a data carrier incl. written findings or via upload portal)
- CT findings (on a data carrier incl. written findings or via upload portal)
- If applicable, further documents (ultrasound of abdomen and heart, findings of dentist and gynaecologist, laboratory values)
- We do not issue transport vouchers. If required, please bring one for the outward and return journey.
During this appointment, we will carry out a selection of the following diagnostics:
- Taking vital signs, blood pressure, pulse, height, weight
- Determination of current blood values
- Echocardiography
- Spiroergometry
At the same appointment, we will then discuss the results with you and our assessment of a possible inclusion on the Eurotransplant list.
The necessary evaluation diagnostics to be organised with your family doctor will then be discussed;
Contact
Telephone availability of the outpatient clinic:
We prefer contact by e-mail.
For patients and doctors:
T: +49 30 4593 2141, +49 30 4593 2140
F: +49 30 4593 2143
Patient:innen, die am DHZC transplantiert wurden, werden nach der Entlassung aus dem Krankenhaus automatisch in unserer Herztransplantationsambulanz weiterbehandelt. Unser erfahrenes Team kontaktiert Sie zur Vereinbarung der regelmäßigen Kontrolluntersuchungen. Auch bei akuten Fragen oder Problemen stehen unsere Ärzt:innen und Pflegenden der Ambulanz Ihnen sehr gern zur Verfügung.
Patient:innen, die ihr Spenderherz an einer anderen Klinik erhalten haben und in die Transplantationsambulanz des DHZC wechseln möchten, können sich ebenfalls gern bei uns melden. Wir prüfen Ihre Unterlagen und Befunde und vereinbaren gern einen Termin mit Ihnen nach Rücksprache mit dem Zentrum der Transplantation.
Telemedizinische Behandlung
Wir bieten unseren Patient:innen in der Nachsorge auch telemedizinische Leistungen an – zur Steuerung der Therapie in der Häuslichkeit. Im Unterschied zur Präsenzmedizin wird bei der Telemedizin die räumliche Distanz zwischen Patient:innen und Therapeut:innen mit Hilfe von Telekommunikation (z. B. Mobilfunk oder Internet) überwunden.
Die Patient:innen werden von uns mit digitalen Messgeräten ausgestattet und können so ihre Messwerte drahtlos und unkompliziert von zu Hause aus an uns übermitteln – jeden Tag. Unsere erfahrenen Fachärzt:innen aus der Ambulanz prüfen diese Messwerte und nehmen, wenn nötig, sofort mit Ihnen oder Ihren behandelnden Ärzt:innen Kontakt auf. Die Kosten für die telemedizinische Mitbetreuung übernimmt Ihre Krankenkasse.
Checkliste für Ihren ersten Termin in unserer Ambulanz
Zur Anmeldung in der Ambulanz werden verschiedene Unterlagen und Dokumente benötigt. Bitte bringe Sie diese Unterlagen zu Ihrem Vorstellungstermin in unserer Ambulanz mit:
- Überweisung
- Gesundheitskarte (Versichertenkarte)
- Ihren Medikationsplan (fragen Sie am besten vorher Ihre Hausärztin oder Ihren Hausarzt)
- Ihren Impfausweis
- Ggf. weitere von uns angeforderte Unterlagen wie Ultraschall von Bauch und Herz, Befunde der Zahnärztin bzw. des Zahnarztes oder Laborwerte
Diagnostik
Während Ihres Vorstellungstermins in unserer Ambulanz werden wir neben der pflegerischen Aufnahme eine Auswahl der nachfolgenden diagnostischen Untersuchungen durchführen:
- Aufnahme der Vitalwerte, Blutdruck, Puls, Größe, Gewicht
- Bestimmung spezifischer Blutwerte bezüglich des transplantierten Organs, der immunsupprimierenden Therapie und möglichen Effekten auf weitere Organe im Körper wie Leber und Niere
- Echokardiographie
Kontakt
Telefonische Erreichbarkeit der Ambulanz:
Montag bis Freitag: 7.30 − 16.00 Uhr
Wir bevorzugen den Kontakt per E-Mail.
Für Patient:innen und Ärzt:innen:
T: +49 30 4593 2141, +49 30 4593 2140
F: +49 30 4593 2143
Zusätzlicher Arzt-Arzt-Kontakt per E-Mail.
Leitung und Ansprechpartner:innen
Maren Godde und Dr. med. Laurenz Kopp Fernandes sind die ärztlichen Leiter der Ambulanzen der DHZC-Klinik für Herz-, Thorax- und Gefäßchirurgie.
Heike Bettmann ist die pflegerische Leiterin der Transplantationsambulanz am DHZC. Sie und ihr Team begleiten Patientinnen und Patienten vor und nach der Transplantation. Als erfahrene Ansprechpartnerin koordiniert sie Abläufe, betreut Angehörige und sorgt dafür, dass sich unsere Patientinnen und Patienten jederzeit gut aufgehoben fühlen.
Helpful information for patients
Guide for patients
We have summarised everything patients need to know about the time after an organ transplant in an easy-to-understand guide:
Guide for patients after transplantation
Selbsthilfeverein transplantiert e.V.
The transplantiert e.V. association has been supporting people and their relatives who are waiting for a donor organ or living with a donor organ for many years. The volunteers live with transplanted organs themselves and are therefore able to provide experienced assistance and support in a special way. On the website of transplantiert e.V. you will find a wealth of information on the topic of organ transplantation and can contact the organisation.
Questions and answers for patients
Aftercare takes place in the DHZC's transplant outpatient clinic and with your family doctor. You will receive regular appointments at the DHZC. You should carry out your check-ups at home in a disciplined manner. If you have any problems or questions, you will always receive competent instructions and answers. It is important that you continue to exercise regularly and maintain an appropriate diet. It is also helpful and useful to socialise with other transplant patients in self-help groups.
Whether you can return to work depends on your professional activity and your wishes. You can usually resume light physical activities after around six to twelve months. However, there are major individual differences here. You will be given detailed advice on this during rehabilitation.
In the case of severe heart or lung disease, breathlessness under exertion leads to a sparing behaviour on the part of those affected. As a result, physical performance continues to decline and the muscles become weak. This condition initially persists even after the transplantation of a healthy heart or lung. Your muscles must first be slowly rebuilt. The physiotherapists will help you with this in the intensive care unit, then in the transplant ward at the DHZC, but especially during rehabilitation in Teltow. There you will train your stamina daily, for example with ergometer training, your muscle strength with strength training and your coordination with gymnastics. The training is tailored to your personal situation so that you don't have to worry about overstraining yourself. You can also learn relaxation techniques as part of your rehabilitation and become calmer and more relaxed through regular exercise.
You should also continue to exercise at home. This will help you to counteract the side effects of your medication, increase your performance and improve your quality of life.
Initially, you may still feel pain in your chest when lying down and coughing. After operations in the area of the rib cage, the corresponding stability must first be restored. This may take a few weeks. You should not lift any weights or put any strain on your shoulder girdle during this phase. However, you will soon be able to do cycle ergometer training and gymnastics under supervision. During strength training, the chest and shoulder girdle should be spared at first. The intensity depends on the condition of your muscles and is slowly increased. After three to four weeks of training, you will usually reach a level of resilience that is sufficient for domestic requirements.
The simplest recommendation for endurance training is: only move so intensively that you can still have a good conversation without ‘gasping for air’. There is also a scale that measures your own feeling of exertion (BORG scale). Here you should train in the range 12-14 out of a maximum of 20 (corresponds to light to moderate exertion). In an exercise test (e.g. as an exercise ECG or spiroergometry), your attending physicians can obtain information on your optimum training range.
However, it is important to remember that the aim is not to maximise your performance, but to keep your body organs healthy! Regular exercise will also help you to reduce risk factors such as obesity, high blood pressure and high cholesterol levels. Learn to pay more attention to your body. You should feel good both during and after your workout.
Once the training programme has been completed and there is no medical reason not to do so, you can and should return to sport. We recommend endurance sports such as walking, running (jogging), cycling, swimming and cross-country skiing. Contact sports are rather unsuitable as you are more likely to injure yourself. However, other sports are possible in principle.
The important thing is to find a type of exercise that you enjoy. However, you should protect yourself from infections and take a break if you have an infection, fever or other complications, e.g. if you suspect an organ rejection.
