Diagnosed in October 2010

[Mary4Mike]

Chris,
My husband kept his insurance through the transplant and is still on it. He never went on disability at work, but even if he would have, he would have still been on the company insurance plan. I don’t think they can drop you just because you have this claim coming up.

Good luck with this.

Mary

[Chris B.]

Thanks Mary for that info. I’m told at my work that after my 500 hours of sick leave are used up I will be responsible for the entire premium which may be between eight and nine hundred per month. I don’t think I can swing that being on income continuation insurance which only pays 75 percent of my wages. So I Was wondering if anyone else had to go on disability during their recovery.

Chris in WI

[Chris B.]

Good news today! My transplant is scheduled for the week of Feb 14th. Now I have about a month to get all my ducks in a row!

Chris in WI

[simplistic007]

Chris,
Best of luck and God be with you.
simplistic007

[Mary4Mike]

Chris,
These transplants centers usually have financial and social advisors that will work with contacting your insurance and find out exactly what coverage you can expect and not expect. They must feel pretty confident in your coverage if they have scheduled you for transplant.

Our prayers are with you as you begin this transplant journey. Please keep us updated on what is going with on you when you can. If you have questions along the way, please ask.

Mary

[Chris B.]

Thanks Mary for the advice. Was supposed to have another transfusion today but I got a call from the hospital that they couldn’t match my blood at the blood bank. This is disheartening because my Hgb dropped down to 7.1 after only 12 days since my last transfusion. I have to go back today to get typed and crossed again so hopefully tomorrow I will be able to get the transfusion.

Chris in WI

[Chris B.]

Ok, I just got back from the hospital after having ANOTHER transfusion. Before my last transfusion on Jan 13th my Hgb was 7.1. In just 5 days my Hgb dropped back down to 6.9. My veins have all but disappeared. I had five nurses poke me eight times today before the last one finally found a vein. Before the next transfusion, probably in about 5-6 days they are going to insert a PICC line since this is happening so often. I am getting frustrated and kind of worried about this rapid drop in my blood counts. MY BMT can’t come soon enough!

Chris in WI

[Mary4Mike]

It’s too bad they don’t just implant a port now. Mike couldn’t believe the relief when he finally had his put in when he was transfusing and doing chemo. The needle thing was a nightmare. It just so happens that we went to AnnArbor U of M today and he had his removed. Since his transplant, he has no trouble having blood taken from a vein. This was a Mediport and it is inserted under the skin. You just see and feel a bump the size of a quarter. The port they put in for transplant was called a Neostar. It had 4 (?) lines coming out of it. Shortly after the transplant, they took that one out and used his Mediport.

Are they giving you 2 units at a time? It is a shame that they are having trouble matching you with blood available at the blood bank. Have they set a transplant date yet?

I pray that things move along smoothly and quickly from here on out.

Mary

[Chris B.]

I am going to have a PICC line inserted tomorrow and while I’m there I will ask for a CBC to be drawn just to see where I am two days after transfusion. I think I am low already as I tried to work today and I was so light-headed I had to come home. I’m just going to ask my doctor to take me off work until after my transplant cause I just can’t do it anymore. Maybe if they would give me more than two units at a time I would be more functional. The date for my BMT is now 3/4/11. I am suppose to be admitted on 2/24/11. I wonder if this is a mistake cause I haven’t heard of being in the hospital for that long prior to transplant. The most I have heard is like 6 or 7 days. I guess I will find out for sure when I see my transplant Dr. on 2/7/11 for my Pre-transplant work up. I will keep you posted. Thank-you for all the support!

Chris in WI

[Mary4Mike]

They don’t usually give 3 units unless there is a loss of blood issue. We asked a doctor once about if it is a good idea to push oneself when their HGB is low and they are exhibiting symptoms i.e. lightheaded, short of breath, heavy legs, etc. He said it is very hard on your organs to push them because they are starved for oxygen…in other words it is not good for your body. It is probably a good idea for you to leave work now, especially if it is a physically demanding job.
Your dates for admittance and transplant sound right to me. Usually the day you are admitted, they implant your port. Do you know what regimen of prechemo they are going to use? Will there be radiation? After this chemo regimen, there is always a day of rest prior to transplant.
I hope things went well today with the PICC line insertion and that this makes things easier for you until transplant.

Take care and keep us up to date.

Mary

[Chris B.]

My PICC line insertion went well. Can hardly tell it’s in there. The IV therapy nurses will be happy to see it in there when I get my next transfusion. My pre transplant chemo consists of Cytoxan and total body irradiation. Thanks for the advice about working. I called in for the weekend and Monday and will see My Dr on Tuesday. I will then ask him to take me off work until after transplant recovery. That’s all I need is to have a heart attack or something before my BMT.

Chris in WI

[Mary4Mike]

Glad that things went well with the insertion. Did you have your counts checked?

Do you have a support system to help you through this and afterward? Family or friends? They will require this info prior to transplant, at least they did for Mike. I had to sign papers that I would be the after transplant caregiver.

I am sure that your doctor will sign for you to go off work especially since you feel so weak. What actually is your diagnosis…..MDS?…..with blasts?

[Chris B.]

I had my counts checked today and my Hgb has dropped to 6.1 now. I will be getting another transfusion tomorrow. I really don’t think these tranfusions are doing much good. I have been having some very intense headaches in the last few days as well as being extremely lightheaded and dizzy just from walking around the house. I called my Transplant Dr today, he sounded concerned but only thing he could offer is to talk to the transplant coordinator and see if she can get the donor to agree to an earlier date.
My origininal dx was RARS-T with +8 chromosome abberation. After the second BMB, he said the percentage of blasts increased slightly but he didn’t give me a number

Chris in WI

[Mary4Mike]

I will say a prayer that your donor will consent to an earlier date. Hopefully they can get the ball rolling so you can be on the road to recovery soon.
As I mentioned before, I really hope you have a good support system around you. It will make a big difference in the process and the recovery not to mention this time leading up to transplant.
I pray you get a boost today from you transfusion.

Mary

[Chris B.]

I had my pre-transplant work up on Monday. What a long day…and night it was! I was admitted to the hospital after my tests were done of course because My Hgb was low. I just had 3 units on Saturday and on Monday it dropped back to 6.2. So Monday night I had 2 units in the hospital and tomorrow I will be getting another 3 units. Ugh! Sure am looking forward to the transplant! I did find out my donor is not from the United States and is young and healthy so that’s good. Two more weeks to wait!

Chris in WI

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