Diagnosed in October 2010

[Chris B.]

Just got the news today that my sister is not a match. I guess the search is on now via the National Bone Marrow Donor Directory. They did say they wanted to do another Biopsy, Ugh!

[Mary4Mike]

You have youth on your side which is a big factor for success in transplant. Are you physically healthy other than the MDS?

I will pray that they find you a perfect match from the registry.

Keep us up to date.

[Chris B.]

Hi Mary! Thanks for the reply.
I have no other health problems. The only meds I am taking currently are monthly Aranesp injections and 2 units of B positive blood roughly every month. Don’t think the Aranesp is working as my Hgb has gone down after both my shots so far. I wonder how long it takes to find a match on the registry?

Chris in WI

[Mary4Mike]

Hi Chris,
I have no idea how long it takes to run your data through the registry to check for possible matches. Hopefully, not long.

As I said before, being young and healthy is BIG. Being transfused once a month isn’t too bad. Usually when it gets down to every 10 to 14 days, it means that your bone marrow isn’t working at all.

Keep your chin up!
Mary

[Chris B.]

I just got a letter from my transplant coordinator that they have located three potential matches already! They will now confirm that they still want to donate and obtain a blood sample to further verify the match. I also have another bone marrow biopsy scheduled on the 28th after Christmas so the Dr can see if my diagnosis has changed at all. This Friday I go for a CBC and an Aranesp shot. This will be the third one and my Hgb has actually been dropping so maybe they will be d/c’d after this one. I looked at my insurance statement and they are six grand a pop!
Happy Holidays everyone!

Chris in WI

[Kenneth_In_Va]

Chris,

That’s almost as bad as my Revlimid: 28 capsules are $11,600 per month. That’s $414.26 per pill! Luckily my copay is only $200 per Month.

Hope the new health plan doesn’t negatively impact that for either of us.

Gene_In_Va

[Mary4Mike]

Chris,
Great news about the 3 potential matches. One of them will be perfect, I just know it. Please keep us updated.

Have a Merry Christmas!

Mary

[Chris B.]

Went to get my monthly Aranesp shot today. CBC done beforehand shows Hgb at 8.1. Standing order says transfuse if less than eight but close enough so I will be getting two units on Monday. I sure feel like I need it. Carried Christmas gifts in a couple days ago and hid them upstairs and when I came back down I was huffing and puffing like I had just run a mile!

Chris in WI

[Mary4Mike]

You’ll feel better Tuesday.

[kabj224]

Hi Chris I took aranesp for months before it started to work…but once it did, I wasn’t as dependent on transfusions…haven’t had one since July. I go for my BMT on Jan 5th at univ of Penn. Good luck with your match and bmt.

[Chris B.]

I had a bad day at work today. I am a nurse and am in a charge position normally which means I do assessments and alot of paperwork. Today I had to cover for another nurse who walks behind a med cart passing pills. Ugh! After just a short time I started feeling flush, light-headed, like I was going to pass out. I don’t think my employer would want to keep me working if they know I can’t do my job without feeling ill. So what to do? I see my transplant doctor tomorrow for another bone marrow biopsy. I will ask him if he thinks I can keep working. Fortunately, I was relieved with passing meds and finished the shift at the much slower paced charge position doing paperwork but now I realize I am limited to what I can do.

Hope everyone had a Merry Christmas!

Chris in WI

[Chris B.]

I have good news and bad news. I saw my transplant Dr. today and he said 2 of the potential matches found so far are perfect matches! Yay! But the bad news is he thinks my MDS is becoming more aggressive possibly converting. UGH! That explains the more frequent transfusions I guess. My Hgb was 8.0 yesterday and I will be having another transfusion tomorrow. This will be the third transfusion this month. Should I start becoming scared? I also had a bone marrow biopsy yesterday so I guess that will tell the story also.

Chris in WI

[Kenneth_In_Va]

Chris,
This syndrome is a blessed roller-coaster ride. Least it has been for me so far. Keep your sights focused as far down the tracks as you can in order to not focus on the hills and valleys along the way.
I am really happy that you have found two perfect matches. Let’s concentrate on them and the hope that that brings. Stay mentally tough. Keep focused.
We’re with you on the ride. Remember that fear is just the body’s way of focusing your attention!!
Let us know how your BMB turns out. Guess you have about 4 weeks to wait for those results or is your center quicker?

Kenneth_In_Va

[Chris B.]

My transplant Dr said the results of the BMB will be back in about a week and he says after I have all my organ function testing done the transplant should take place in January some time but then I talked to the transplant coordinator and she said doc is a little ahead of himself and if everything works out we are looking at February to Mid March. Of course if it is more aggressive they will do everything possible to expedite the process. I have alot of support from family, friends, co-workers and of course everyone on this forum and I appreciate all of it! Thanks!

Chris in WI

[Chris B.]

Got word from my doctor that my 2nd BMB was similar to the first with a little increase in the percentage of blasts. He said to be patient until the donor is in place. In the meantime, I will get a CBC every two weeks and transfusions as needed. I’m ok working as long as I don’t have to exert myself too much. If there is anybody who was still working at the time of their BMT, were you able to keep your insurance at work or did you have to apply for SSID?

Chris in WI

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