Like a New Born Baby

11/29/13 – I am trying to ask as many questions of my doctors so I can have a better idea what is ahead of me. Yesterday when I asked one of the doctors he said: “You are like a new born baby, you have no immune system and you have to give it time to develop.” It seems that once the stem cells are infused in takes about 14 days for them to find their way to where they need to go.

Speaking to another doctor I was told that my white cell counts will go down before they start to rise. A little at a time my counts will start to increase but this is not something that happens overnight. Once I hit 100 days after the transplant the expectation is that I should begin to see some stability with my new immune system… but that is by no means the end. I will still need to be monitored to make sure I am not running into issues like graft versus host disease.

To find more information on the process I logged onto BETHEMATCH.org Here is some interesting information I found:

Early recovery: Days 30-100: This can be a time of transition in your recovery. You will probably be leaving the hospital though you will still receive frequent outpatient care at your transplant center. Your transplant team will continue to care for you and watch you closely for infections and other problems.

After your new cells engraft (begin to grow and create new blood cells for your body), your blood cell counts will begin to improve and your immune system will become stronger. This can be a time of transition in your recovery. You will probably be leaving the hospital though you will still receive frequent outpatient care at your transplant center.

You will, however, still be weaker than normal for many months. The risk for complications from the transplant is highest during the first 100 days after your transplant. Your transplant team will continue to care for you and watch you closely for infections and other problems. They will also give you guidelines to follow to help prevent infections. If you have any symptoms, you should contact your doctor right away.

After leaving the hospital: Sometime during the first 100 days, after you have engrafted and you’re able to take oral medications, you will probably be able to leave the hospital and receive your care as an outpatient. You will play an important role in your own health care. When you leave the hospital, you will need to:

·        Closely follow guidelines to reduce the risk of life-threatening infections and other complications.

·        Take all of your medications exactly as prescribed.

·        Eat healthfully. Follow your medical team’s instructions for safe eating and food handling. This will help you reduce your infection risk and regain your strength. 

·        Call your doctor right away if you have any symptoms or signs of infection.

Each patient will have a different experience transitioning to outpatient care. For some patients the transition is smooth while many others may experience symptoms, side effects, or complications that require re-entry into the hospital. It is common for patients to re-enter the hospital to be treated for symptoms and side effects after transplant. Of course, not all patients need to re-enter the hospital.

In your first weeks or months after you leave the hospital, you will go to the outpatient clinic often, perhaps even daily, for care. If you travel to a transplant center far from home, expect to stay near your transplant center for treatment for at least the first 100 days and until any complications are resolved.

Since you’re going to be very tired post-transplant, your caregiver will be looking after your daily needs.

Here are some things you can do to rebuild your health and strength:

·        Get enough rest. You will be tired because your body will be working hard to recover from the intense treatment you received during your transplant.

·        Get some exercise every day, as you are able. Many people who have had a transplant say it helped them to get up and walk each day, even if they could only walk a short distance. Over time your strength will grow and you will be able to do more.

·        Be patient with yourself and with the time it may take for your body to heal.

After your transplant, your immune system will be very weak. This is caused both by the preparative regimen you received before your transplant and by the drugs taken after your transplant, such as those used to prevent a complication called graft-versus-host disease (GVHD). GVHD is a common complication of a transplant from an unrelated donor.   

Things to keep in mind about infections:

·        Most infections happen in the first 100 days after transplant, but they remain a risk as long as your immune system is weak. 

·        Infections can be very serious and even life-threatening in some cases, so your transplant team will watch you closely for signs of infections. 

·        You will receive medications to reduce your risk of infections. 

·        You and your caregiver’s awareness of the symptoms and signs of infection are the first and most important line of defense against serious and life-threatening infections after you leave the hospital. If you have any signs of an infection, for example a fever, tell your transplant team right away. It is important to treat infections quickly.

After a transplant, your immune system will not be at full strength, even after one to two years. You may still need to take anti-infection drugs. Patients who get GVHD may have weak immune systems for even longer because of the medicines used to treat GVHD.

Acute graft-versus-host disease: Graft-versus-host disease (GVHD) is a common complication after an allogeneic transplant, a transplant in which cells from a family member, unrelated donor or cord blood unit are used. In GVHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host).

GVHD that appears in the first 100 days after transplant is called acute GVHD. When GVHD occurs later, it is called chronic GVHD.

Certainly from everything I am hearing I will need to exercise extreme patience through this process. I will do everything I can to keep myself active with the goal of avoiding being bored. The key will be to keep my spirits up. With all the support I have available to me, I am sure this is something I will be able to do. 

 “… As for that in the good soil, they are those who, hearing the word, hold it fast in an honest and good heart, and bear fruit with patience.” (Jesus speaking in the parable of the sower)

Luke 8:15 

More to come…

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