"Mini Transplant" in April

[AngieA]

My husband will have a mini transplant next month for MDS. He'll go in for some low dose chemo and radiation a few days ahead of time, get the transplant and go home next day. Next day....when the doctor said that I almost fell out of my chair. He also said since I only live 2 miles from the hospital (and that's also my place of employment) I don't need to stay home 24/7 to watch him...I can go to work...(yeah finances!)

He made it sound like a piece of cake....hmmm. The closer it was getting to the date, the more stressed out about financial issues of not working and terrified about not doing something right, or noticing the right thing, etc as a caregiver I was getting. I'm feeling much calmer now. Sounds like I just continue my extreme infection control measures around the house, keep up with what meds when, meal preps, laundry, shopping and all the things I've been doing for the last 2 years.....Right????

[Neil Cuadra]

Angie and Bill,

I know that transplants have gotten faster, due to reduced preconditioning, improved procedures, and the goal of getting patients out of the hospital as soon as it's safe, but it's a surprise to me that Bill could go home the day after a transplant!

If finances are an issue, perhaps getting to go home sooner will help, because the medical bills will be much lower. Do you have some vacation time saved up?

Do you have other family members who can share some of the supervision and chores at home?

[AngieA]

Bill has tolerated the chemo well. Also has been getting ATG. He had a reaction to the first dose but nothing after that. Today is his day of rest.

Tomorrow he gets TBI (total body radiation ) in the morning then he'll get his new stem cells that afternoon. Then they are talking letting him go home on Thursday. We are a little nervous about that. But we only live 2 miles from Emory so can be back quickly if need be....

[riccd2001]

Hi Angie: You may already have these, but make sure you have a handy working temperature and BP monitor. And keep a written baseline record - could help a lot if you see that those basics are getting off track. All the best and do keep us in the loop when you can.

[SLB]

All the best to you & Bill. I can understand being at home can be quite daunting but luckily you live so close! However sometimes the mental health benefits from being at home are worth it. I was discharged on day +21 after being originally told I would in for 6-8 weeks. Very happy to be home but found leaving hospital scary too! I assume you will be back regularly for blood tests etc.. keep us posted.. all the best.

[MDSPerth]

Angie, Best wishes to you both as Bill takes this journey. Paul was admitted to hospital on the 27 march to start his SCT. The stems were transplanted on 4 April. Today as I write this he is at day +7.

The regime of medication and further chemo since the transplant has been overwhelming and I think you are extremely brave to be taking on the challenge at home.

All things considered Paul is doing really well but we realise that he is in a marathon, not a sprint.

I hope that the bumps on on Bills journey are not too steep.

Sandi

[squirrellypoo]

Wait, I'm confused - he's getting a mini-transplant, but he's getting TBI? Usually TBI automatically means it's a full transplant, as that's a lot more serious than chemo... I'm really surprised that they're letting him go home before engraftment! Mine was one of the easiest and quickest engraftments the ward had seen, but I was in for 3 weeks.

Good luck to Bill!

[AngieA]

He was discharged the day after his transplant. So far everything as far as the transplant goes is good

However, the second day he was in the hospital, he stretched before getting out of bed and heard something pop in his back. Seems he has degenerative disc disease..The pain has been really bad. Friday I could not get the pain under control with what we had at the house. Called the transplant doc about midnight as he was close to hysteria. She basically said since it was not related to the transplant, they could try to deal with it in the morning since he was coming to clinic the next morning or just take him to the ER....But 2 am it was so bad I didn't think I could safely get him down the steps and in my car to go to the hospital so I called an ambulance. After telling the ER doc what the situation was...basically he was a BMT patient, I had maxed him out on oxycontin, oxycondone, flexerall and ativian within the last 2 hours....within the next 4 hours he got 3 shots of morphine, 2 shots of valium. Needless to say he was totally trashed for the next 24 hours. He was like dealing with a dementia patient. I really wished the transplant doc would have been more willing to become involved with the issue. Next morning at the clinic, they check his blood counts of course and the level of one of the anti rejection drugs. He was also retaining water. So he got some lasiks for that. The fellow sat down with me for probably 20 minutes and we discussed all the different drugs he had been administered and other concerns I had. So basically the remainder of the day when he would sleep, so did i...

Today is better. He is still in pain but it is managed better and his mind is alot clearer.

Since he takes about 30 pills a day, I keep an extensive daily log on meds. It has been my most valuable tool in his care. I also log his temps, BP and any notes I think important on symptoms.

Squirrelypoo, Although he did receive TBI, it was at a lower intensity than the standard rate for a full transplant. He's had no reactions from it except a very dry mouth and they told him that it was a possibility that his hair would fall out within a couple weeks.

But, so far, if it were not for the back issues, he has tolerated the transplant itself very well.

Now waiting to see if it will be successful

[MDSPerth]

Good luck Angie, I admire you both for taking on this challenge at home. Paul seems to be tolerating everything they dish out to him quite well after his transplant on the 4 April, but with the medication and care he is receiving, I would be very nervous at home.

Today he is at day +11 and has his last dose of mexalthate - does you hubby have the post transplant chemo, and if so, does he return to his doctor for this?

We have been told that best case senerio with Paul is discharge at three weeks, but generally the average time of hospitalisation is 5 to 6 weeks!

Sorry to hear he has the back pain, but hope all with the transplant goes according to plan.

[AngieA]

The challenge of taking it on at home was not an option...if I had my way, he would still be there...But we are managing. Another doc appointment today. His numbers are falling as expected. His WBC is non existent, RBC 26% and platelets are 27,000. His sodium level is 126 which is getting in the back to the hospital again level. So he's managed to eat some salted roasted almonds, that should help We go back again to the doctor on Thursday and expect the platelets will have fallen to the transfusion level. My guess is RBC will also as they were at 28% on Saturday.

They have increased his pain meds and put him on a new bowel regimen. So I'm hoping he will have a better day tomorrow.

He's slept alot of the day, so I got in a good nap too! Even managed to sit out on the patio and paint a little

No one has said anything about doing anymore chemo.

[Momhope]

Hello Angie,
how is Bill doing?
hope is doing well now.

[MDSPerth]

Same Angie would love to know how you are both coping. Day +20 for Paul and he continues to be building strength. So far everything has gone like a dream although I will say I am glad it's not me in his body.

Looking at him though its hard to believe what he has gone through.

Hope all is well

[AngieA]

So he was readmitted the following Tuesday for the back pain at my insistence. The pain is some better controlled but occasionally requiring IV morphine. I have been concerned that they have over medicated him because his mental confusion has greatly increased. He was sleeping hard and hard to arouse. Sunday he started having hallucinations. So now they are backing him off pain meds and feel the higher doseages of cyclosporine causes the tremors and hallucinations. He got a MRI of the brain today to see if it is the cyclosporine Because he has been mostly in the bed sleeping he's had a partial collapse of a lung. CT scan today as well. He's been running a low grade fever for several days and has some nasal congestion. Nausea has been a major issue as well fir the last few days. He has really long hair and it has started to come out today. Today is +14 day and the only promising number is his WBC is up from 0.1 from yesterday to 0.3 today. The docs don't seem concerned that we are not seeing those numbers go us more significantly. (I am...). He's on water restriction and receiving saline IV because his sodium level is very low at 123. But with all of this he seems better than yesterday.


A nice jump to just an even 1.0 would give our spirits a really needed boost. Maybe tomorrow

[Momhope]

hi Angie sorry to hear all those complication, this is really scary but hope he gets better soon. we are getting my mom ready for transplant but everytime I read all the complications you guys are having make feel very scare...I will be praying for both of you.

[AngieA]

He had a really bad bout of Gut GVHD...I thought he might die. He spent 8 days in the hospital, puking and dry heaving, altered mental status..but he pulled through and feels better today than he's felt in almost 2 years. He still has some elevated BP and his hands are a little shakey, so using a mouse or touch pad results in alot of unintentionally clicking on stuff he didn't mean to causing some frustrations...but oh so much improved than just a week ago.

They have him on a high doseage of prednizone so most of his pains and stiffness has gone, has a good appetite and more energy that I've seen in a long time. He's getting stronger every day. This weekend will be going out to lunch...to a public place . First time he's had medical permission to eat out in over a year. He's excited about that! Me too