Home Away From Home
Yesterday, on Day +14, Harvey was discharged from the hospital. This is a little sooner than we expected and sooner than most double cord mini-allo transplant patients are discharged. The reasons for early discharge:
- Robust and steady improvement in white blood cell counts
- No oral mucositis and ability to take all medications by oral pills
- No fevers
- No infections of any kind
- Strong support system at home
We are delighted to have him home. Harvey is just as happy to quit doing the infusion “pole dancing” and not be woken up every few hours for one more set of vital statistics. We brought home with us a grocery bag full of medications and a handy-dandy weekly pill organizer with dividers for four sets of medications each day. Actually, it sounds more intimidating than it is. Taking a little time to get things sorted out and organized makes all the difference.
As one of the prerequisites in getting Harvey weaned away from the 24 hour care of the transplant ward we went through an hour long training program on how to take care of his double lumen Hickman catheter. This is the surgically implanted catheter that allows direct access to his jugular vein. The Hickman was installed on Day -1 and it has made the whole process of drug administration much easier. Imagine nurses having to poke around to find yet another good vein for the dozens of intravenous medications that must be administered during the transplant process. Harvey needs to keep the catheter in place for quite a while longer. Now the need is not so much for iv antibiotics and the like – he gets them as oral pills now. But down the road he will be needing transfusions of red blood cells and platelets and that will make the Hickman very useful again.
Caring for the catheter is an important thing. Last thing you want is letting some infection set in there, with direct access to the patient’s heart and blood stream. Besides keeping it pristine clean, dry and free of infections, the other need is to keep it from getting clogged. Since blood has the built in capability of clotting, this means the catheter must be flushed with a heparin solution (anti-clotting material) each and every day. Clogged catheter is not a good thing. It may be possible to rescue it, but if that fails the usefulness of that particular catheter is finished and you may be looking at installation of another catheter. Who needs that hassle? While cleaning and heparin flushing of the catheter may sound a bit intimidating, it is actually quite simple provided people pay attention to the details.
For some days Harvey will be visiting the BMT outpatient clinic on a daily basis. They will be changing the dressing on his catheter at that time, doing the heparin flush, checking his blood work, giving him any transfusions that he may need. As of today, his WBC has inched up another notch to 1.6K. His hemoglobin is now at 8.4, still stubbornly higher than the hospital’s trigger point of 8.0 for a transfusion. However, for the past couple of days Harvey has been getting “classic” migraines, something he normally gets only once or twice a year. I asked the doctor we saw at the clinic whether the migraines could be due to reduced oxygen availability to the brain, on account of the low hemoglobin. He thought that was a novel but not unreasonable idea and therefore ordered red blood cell infusion for tomorrow, ahead of the weekend. Hey, you never get anything if you don’t ask. I am just as happy he is getting the red blood cell boost, I noticed his fatigue seems to be getting a little bit worse.
Here is another little detail about the blood transfusion that may be of interest to other patients going through the process. CMV (cytomegalovirus) is a nasty critter that stays in your body for the rest of your life if you have ever been exposed to it. Its reactivation during periods of deep immune function loss is a major risk factor for transplant patients (as well as patients undergoing garden variety chemotherapy).
Obviously, if both you and your donor are CMV seronegative, there is little chance of CMV reactivation since neither of you have ever been exposed to this particular virus. Cord blood is almost always seronegative for CMV. It therefore boils down to whether the patient has ever been exposed to CMV (seropositive) or not (seronegative). If both patient and donor are seronegative, it is important not to spoil that squeaky clean record by getting blood transfusions with CMV seropositive blood. At the transplant center they make sure they ask the blood bank to supply CMV seronegative blood for cord blood transplant patients who are seronegative to begin with.
That raised the question in my head, how do community hospitals treat patients requiring blood transfusions as a routine matter, say after their blood counts tank post chemotherapy treatment? Do they check to see if the patient is lucky enough to be CMV seronegative? And if that is the case, do they then make sure they keep the patient uncontaminated by giving him/her only CMV negative blood products? Something tells me this does not happen all the time. Do you know if you have been exposed to CMV? Do you know your CMV status? It might be worth knowing, especially if you are likely to need transfusions in the near future.
Be well,
Chaya
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16 comments on "A New Phase Starts"
Follow-up comment rss or Leave a TrackbackCongratulations on being kicked out of the nest! Probably some bumps left in the road, but the hard part is behind you!
I am thrilled to hear your good news. And, I am glad he got out on the best weather day of the week.
Stay warm,
Liz
St. Paul, MN
Mazel Tov on getting sprung!!!
I’m affiliated with a large hospital and don’t know whether the CMV status of donor blood is checked, but suspect that it isn’t. I think you raise an important point and I will check tomorrow whether or not this is done and get back to you. Clearly this is an important issue to seronegative patients who undergo chemotherapy or transplantation, no matter what the underlying disease.
I sincerely hope that you both enjoy your ‘new freedom’, even if it’s incomplete. Each step toward a resumption of normalcy will no doubt seem sweeter and sweeter.
So glad to hear that Harvey has been released. Now, he can eat his comfort food at home with you. Sounds like things are going great!
How sweet it is to have things go well now. I agree that one needs to speak up, ask questions, check things out, even in the best of hospitals. You are our champion.
Wow! I’m amazed Harvey is out so soon. That’s really fantastic!
BTW, keep an eye on the Heparin that Harvey gets in light of the recent recalls of tainted supplies coming out of China through Baxter Int’l. and B. Braun Medical.
Wonderful news on Harvey’s progress! Getting out of the hospital is a milestone in his new, CLL-free life.
As to blood transfusions, I ran across this info at bloodbank.com:
“The following tests, that are not required for most transfusions, are often performed on Blood that may be needed for newborns and special needs patients:
“Antibody to Cytomegalovirus (CMV) - Screening for the antibody to cytomegalovirus (CMV), which is a very common virus in our environment, is performed on products intended for immunocompromised recipients such as patients undergoing chemotherapy for leukemia or cancer, transplant patients, and low birth-weight infants. ”
http://www.bloodbook.com/test-donated.html
. . . “not required . . . often performed.” In other words, you takes your chances.
I almost had transfusions twice, each at a different hospital. Certainly at the second location — a regional medical center serving 50,000 people — I was not checked for CMV, nor was the blood. As I wrote in my blog (CLL Diary), Marilyn and I refused the transfusion as the blood was not irradiated and the ER doctor essentially said I shouldn’t do it because of the possibility of viruses in the blood, including CMV and “the flu that has been going around.” It’s not only CMV that’s out there. Immune-compromised patients, especially those thinking of a transplant in the near future, should be careful that they don’t pick something up in a transfusion that might throw a monkey wrench into the whole process.
http://clldiary.blogspot.com/2007/11/im-doing-chemo-now-part-1-how-need.html
Keeping the port clean will become like brushing your teeth. Second nature.
Keep up the good work Harvey. I’m so proud of you.
AND..Chaya, take care of Chaya, also.
Rita
Fantastic news!
Chaya - again you have proved the value of asking the right question which is so obvious after you raise it yet so hidden before the fact!
I believe you stated that you are planning to begin refunding for CLLTopics at sometime in the future. Can you permit me to have some fun with the girl/boy cord blood issue toward kick starting that goal? So far I am in a minority in the belief that it will be the male cord winning out. So, I propose that those who wish to join in the guessing game put any amount of money up as a new funding pledge and choose. At some time in the future you could tell us which it is and those who guess incorrectly must double their pledge toward CLLTopics funding. All bets are really just pledges so CLLTopics and all CLLers are really the winners while having some fun at the same time.
I maintain belief that my guess is superior not because of any prejudice in a false belief in inherent male superiority but in human nature at the cellular level. In the presence of the female cord blood the male cord blood is obviously showing off trying to prove that “he” can protect Harvey and get him on his road to recovery quicker. With this profound insight on this interesting development from Harvey’s transplant I am pledging token amount of $20.00 on the male cord winning out. If Debbie is reading this what do you say?
Though Chaya has declared on the side of the girl cord, Harvey has remained silent to our knowledge owing to his wisdom no doubt.
Keep the good news coming!
Wonderful news of PC’s early hospital discharge. May he surpass all expectations from here on out!
(I have had 32 red blood cell transfusions and the blood is ALWAYS leuko-reduced and CMV-negative. And yes, headaches usually precede my need for a transfusion.)
Chaya, how happy I feel to hear of Harvey’s awesome progress. Wow! You both will continue to be in my thoughts and prayers. I wonder if the CMV status should be determined frequently - like weekly. My understanding is that it can “hide” very well. Also, is it advantageous to get single donor red blood and platelet transfusions? Awaiting more good news, Michael
Chaya and PC-
So Harvey was sprung on one of the worst days of our so-called spring! Thank goodness you will be here long enough to know that we sometimes do have very pleasant weather.
I’m sure it feels good to be out of the hospital. I’m equally sure that Harvey has the best possible caretaker. What an emotional roller-coaster for both of you!
Thank you for pioneering this treatment and for keeping us informed of all the details.
I’ve been out of town a lot but will be here in Minneapolis, with car, all of April and half of May. If there is anything at all I can do, please let me know. E-mail for my phone number because the one in the phone book is wrong.
Enjoy your freedom!
Cathie
YEAH!!!!!!!!!! Beth and John
DEAR CHAYA,
JUST READ YOUR E-MAIL REGARDING HARVEY’ PROGRESS. WHAT UP-LIFTING AND ENCOURAGING NEWS. I AM 85 YEARS YOUNG AND HAVE HAD CLL SINCE 1994 (14 YEARS) AND WONDER IF I WOULD BE A CANDIDATE FOR THIS PROCEDURE. I DID NOT NEED TREATMENT UNTIL 2024 AT WHICH TIME THEY GAVE MY FLUDARABINE. IN 2024, I HAD ANOTHER CHEMO TREATMENT OF THREE MONTHS ON FLUDARABINE AND RITUXAN. THEN IN 2024 I HAD THREE MONTHS OF FLUDARABINE CYTOXIN AND RETUXAN. IN MARCH 2024, MY IMMUNE SYSTEM WAS AFFECTED. MY BODY WAS PRODUCING ANTIBODIES THAT WERE DESTROYING MY RED BLOOD CELLS AND HOSPITALIZED. AFTER 5 BLOOD TRANSFUSIONS IN 5 DAYS. I WAS MEDICATED WITH CYCLOSPORINE AND PREDNISONE, HAD BONE MARROW TEST WHICH THAT MY BODY WAS STILL MAKING RED BLOOD CELLS. mY WHITE CELLS ARE IN NORMAL RANGE, BUT I AM STILL ANEMIC. I WOULD APPRECIATE ANY COMMENTS OR SUGGESTIONS THAT YOU CAN SEND ME. MY VERY BEST WISHES TO YOU AND HARVEY. MAY YOU STAY HEALTHY AND GROW OLD TOGETHER.
HELEN
Helen:
I applaud your spirit, you are truly young at heart!
As for your being a candidate for the double cord transplant, that depends on the age and fitness cut-offs each protocol has as part of its inclusion criteria. I believe the age cut-off for this particular clinical protocol is 75, so you would not be eligible for it. But there may be other protocols out there that are less restrictive - I do not know.
However, I must warn you that any kind of a stem cell transplant, even the so called “mini” transplants, are pretty tough on the body and therefore a decision not to be made lightly. Please be sure to discuss all of your therapy options with your doctors and your family before you make decisions.
Chaya