MBT questions

[Di / Scott’s wife]

My husband is scheduled for his BMT for 12 Aug…
We met yesterday with the Transplant Team… and his brother arrives today… so things seem to be in order…
I am out of vacation and sick/personal days at work… I do not work for a company big enough to qualify for the family leave, but I don’t think that I will have a problem (I just won’t get paid, only problem is being able to pay my bills)…
I would like to know what days are most important that you would want to be with spouse or spouse would probably want you with him???
I would like to have an idea… I wish I could just not work and be right with him…
any thoughts would be greatly appreciated…
thanks,di

[Kathryn]

Hey Di,

just my two cents worth…. I highly recommend being w/ him during the time he might be most vunerable. In all honesty, I don’t know much about the patient’s condition after a transplant, but my advise is just from my experience w/ my dad. There are a couple of instances that come to mind. One was after he had a new drain inserted and that eve. I had insisted on spending the night w/ him, even though he & my step. felt like he would be okay. Thank goodness I did! The nurse gave him an injection of some demerol & fenergan. After the injection she said that he would need to get in his bed and left him sitting on the edge. It hit him like a brick and he laid back from that positiion and wasn’t able to move himself up… or really move at all. I could tell it was very not a way he wanted to feel. He was truly “wasted” on the medicine. I shudder to think of what could have happened had I not bee there! There was another time after his surery in ICU that no one spent the night w/ him. He had done quite well that day and was in good hands… that was the same night his heart began acting up and they coded him…..It could have been a result of the blood pressure med.. No one really knows what happened between day 2 & day 3 post surgery. His heart was unknowingly quite weak apparently….

Anyway, just thought I should share… Food for thought.

You guys are in my prayers and I’ll be saying some extra ones August 12th on and sending my best wishes!!!

Take care,

Kathryn

[Marsha]

Di,
I had a transplant in November. Most of the time I was alone during the day. Someone was there at night during and after transplant and for the next week after cause I was so sick. My husband was laid off at the time so he was there in the evenings, he has his own business on the side too. I felt comfortable with not always having someone there cause I slept and the nurses were always checking on me too. I guess you might have to play it by ear, cause the treatment affects everyone differently. I had a MUD transplant, but have heard the side effects of a related match are a bit easier. Hope this helps and prayers are with you both as you enter this part of your journey for cure.
God Bless, Marsha

[ButchL]

When my wife had her transplant, I was there for the actual procedure. The procedure is nothing more than a transfusion but it was a bit emotional for her.

I would usually work days and be there after work each night. I slept there some of the weekends, depending on how she was doing. The staff is amazing at Roswell and the times I couldn’t be there, they took really good care of her.

I think you do have to just play it by ear. If it is a bad day, be there if you can. There are always good days and bad days, you just have to keep both your spirits up and get through it together.

I got to the point where I stopped worrying about myself and got sick. You can’t take care of the patient if you are sick so make sure to take care of yourself as well.

Good luck with everything. I wish you the best!

[lindajo]

My white cells, red cells, hematocrit,hemoglobin, mean cell volume(MCV), MCH and Mean Platelet Volume(MCV) are all always out of the normal range. Now my ferritin level is high in the 400-600 range. Since it was o.k. when I had my last transfusion in 1999 we are unsure why it has jumped. We are still keeping an eye on that to see what happens next.

They vary greatly from month to month. My platelet count is the only thing that generally stays in the normal range. My white cells are almost always around 2.5-2.8. When they get into the normal range of 4.4-11.3 (for women) then it is generally because I am fighting an infection.

When reading others counts I have to remind myself that men and women have slightly different normal ranges. I have also noticed that different labs put the ranges at different values. They wonder why we patients and families have such a hard time keeping up.

[lindajo]

sorry I posted the wrong reply to the wrong topic. w

[lindajo]

Dear Di, I am having trouble with the website reply button tonight. I am so sorry that you are getting three confusing messages from me tonight.

It is hard to know when you should be there during the transplant. Just follow your instints. Your intuition is the best guide. The staff at the transplant centers will keep you up to date and help you make those decisions if you just ask. I will pray for every member of your family. Take care of yourself so that you don’t get run down Scott will need you healthy and rested when he gets home too. Lindajo

[Sandy L]

Wishing you the best of luck and know that “We” (the forum) are there for you and will be looking for your updates.

[Jimbob]

Di,
I had my SCT 16 months ago after 5 days of total body irradiation and 2 more days of heavy chemo and a day of rest. I remember the worst days were the last couple of days of TBI. The day of the SCT was actually a fairly calm and easy, almost anti-climatic day. The worst days were +2 and +3 after SCT, especially just after midnight IV. I had “Churn and Burn” and “shake and bake”. My gut would boil and then break loose and I would flush about every hour. Then I would burn like crazy and shake. The docs and nurses told me that was unusually but other patients told me they jad similar experiences. Those were the days that I wanted someone with me. Most of the rest of the time I was happy to just sleep whenever I could. I did not want someone sitting around waiting for me to wake up. I know it is different for each person but that is my input. Oh, about day +2, many people get a really bad mucus build up coated tongue. The medical staff said I could only rinse, no brushing but that only made more mucus! I had a tongue cleaning and used that to scrape my tongue and a waterpick to clean out my mouth. It made a BIG difference. Make sure non-alcholic mouthwash is available, maybe with lidocaine added. Good idea to have teeth cleaned before transplant as no tooh brushing for a while afterwards. Just some suggestions.

[Di / Scott’s wife]

Thanks for the imput…
I don’t understand alot of what is going on but this forum helps me to feel like I could be prepared for this journey…
I really appreciate everyone here… and I will try to take care of myself throughout all of this…
and will keep you all in my prayers…
thanks, di

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