[dogmom]

Re: Dear hubby's stem cell transplant saga

by dogmom on Fri Jun 10, 2016 12:53 pm

Well, they decided to give him a bag of fluids today to give him a little boost. His kidneys were severely compromised at diagnosis so they just want them to not be taxed too much while he is not eating and drinking so well. I left him with his fluids and the great care of the clinic staff and went to get some fresh air and lunch.

We have appointments for 8:30 am the next two days at the weekend clinic in the main hospital and then to see the doctor at the regular outpatient clinic at 7:00 am Monday.

Sure hope he takes somewhat of a turn upward this weekend or I am afraid he will get really discouraged.

[dogmom]

Re: Dear hubby's stem cell transplant saga

by dogmom on Fri Jun 10, 2016 3:12 pm

He has thrown up a couple of times today despite the meds, but I hope, as the clinic staff says, it is due to this being his low point and it will get better in a few days.

[Wife]

Re: Dear hubby's stem cell transplant saga

by Wife on Sat Jun 11, 2016 9:23 am

You need to make sure you are taking care of you too. It is very important that you don't get run down or discouraged. So do get out when he is at the clinic when you can. Sounds like things are going well. Tell him to keep up the good work. Lol

[Ellen Harris]

Re: Dear hubby's stem cell transplant saga

by Ellen Harris on Sat Jun 11, 2016 12:06 pm

Dogmom,

Don't get discouraged. His tummy upset is perfectly normal for his stage of the game. Your husband is a very strong man. He will probably have a few bad days, and when his white counts start to recover more, he will feel lots better.

I know it is hard for you since his recovery has gone unusually well. But a transplant is a different animal. He was given a toxic strength infusion of chemo. The body will react. If he didn't he would not be human. Don't be surprised if he runs a low grade fever when his stem cells start to engraft. They will test him for all types of infection (blood, stool and urine, sinuses), so don't be too concerned, they do this with everyone.

The most important thing is to get him to stay hydrated, especially if he has no IV. Water probably does not taste too good to him now. Anything you can get him to drink which he finds palatable is fine ... even coke. If you think he is getting dehydrated, take him to the hospital immediately. That can be dangerous for him in so many ways, but most especially his kidneys, which may be slightly compromised from the myeloma.

Hang in there, it will get better. Don't be afraid to ask for help from the hospital staff. It is not at all uncommon for outpatients to need a brief overnight hospital stay for fluids and observation. If he needs that, don't fight it. He will be better off in the long run being cared for by hospital staff and he will regain his strength sooner, that is what is recommended.

By all accounts he is doing very well, and I anticipate that once he gets over the hump, he will make an excellent recovery. Keep us posted.

Ellen Harris

[dogmom]

Re: Dear hubby's stem cell transplant saga

by dogmom on Sat Jun 11, 2016 1:54 pm

Thank you all so much for the support. I need it.

They did not give him fluids at clinic today. They said his pressure was good and they would access at clinic tomorrow again for fluids. He is not throwing up a lot but he isn't drinking much either. They told him not to worry too much about eating if he could not, but they did tell him to try to drink. We have Sprite, tea, coke, Gatorade, milk, orange juice, but nothing tastes good to him. I tell him to sip, not gulp, but it is hard.

I hope his cells start to engraft soon. He is getting very discouraged. He hasn't felt this bad since he was first diagnosed.

[DebbieJ54]

Re: Dear hubby's stem cell transplant saga

by DebbieJ54 on Sun Jun 12, 2016 7:52 am

Hi Dogmom!

Hoping your hubby begins to feel better soon! During this phase of the transplant, I wasn't hungry, food tasted bad, and water was just horrible. There were a few meals that weren't too bad - I could take a few bites - chicken chop suey, spaghetti (surprisingly), and I still could enjoy some Mexican food. I guess the spices were still something that tasted 'normal'. And canned fruit. I carried packets of Gatorade powder with me everywhere and now, at day 84, I am just beginning to find water palatable again. (Still use my Gatorade sometimes!) And, my taste has been back to normal for quite some time now.

The nausea portion of the recovery is the hardest time. I, too, experienced a bit of engraftment issues – rash, diarrhea, and low-grade fever. I reacted to the plasma and I reacted to the stem cell infusion, so needed steroids and I was sent home with prednisone. Tapering off of that needed to be very slow as my symptoms returned if I tried to taper too quickly.

I hope that your husband begins to feel better soon! Exercise – daily walks – is very helpful in the recovery and return to regaining his energy.

Rooting for you!!

[Rhonda]

Re: Dear hubby's stem cell transplant saga

by Rhonda on Sun Jun 12, 2016 9:03 am

Hi Dogmom

I agree staying hydrated is very important. Ginger ale worked for me, not sure if you have tried this yet. I was also able to eat a banana and some yogurt to stay down too. My transplant was outpatient too, I went home with a portable hydration station. This was used until my RBC was up.

I have been following your posts and glad to hear your hubby is doing so good. Just remember transplants take time, usually more time then you want to give, to recover,

I wish you both the best!
Rhonda

[dogmom]

Re: Dear hubby's stem cell transplant saga

by dogmom on Sun Jun 12, 2016 12:28 pm

Today in clinic he got a small bag of fluids and had to have platelets. His WBC and ANC are still 0, but his HGB is 10.2, so he has not needed a blood transfusion yet. They still say that, even though to him it does not seem encouraging since he feels so bad, that he is progressing along according to plan.

His temp at clinic was 99.2 F (37.3 C), but when he took it after we got back to the motel it was 98.0 F (36.7 C). They were not concerned about the small elevation in temp at this stage.

I have not tried ginger ale but will suggest this to him. Today the food of choice has been canned mandarin oranges. No vomiting so far since early yesterday evening. I was a little worried that his low intake of fluid over the past couple of days would start to affect his kidney function, but all those labs are still as his normal usually is.

We go to clinic tomorrow at 7 a.m. Until then he rests and I do whatever I can to pass the time.

[Music box lady]

Re: Dear hubby's stem cell transplant saga

by Music box lady on Sun Jun 12, 2016 3:32 pm

I also had a problem finding something to drink that tasted good and finally tried Kool Aid. The orange and grape worked for me. I hadn't tried that stuff since I was a kid and was surprised to find that it worked. I liked the stronger flavor of the package over the ones you pour into a bottle of water. I also liked the glass full of ice. Another thing I enjoyed was watermelon. Since it has a high water content, that may help also.

Hubby seems to be doing very well. We are never prepared for what the transplant is actually like. It is a good idea while he is at the clinic for you get to do some Me time. I always encouraged my family to go and do something while I was getting infusions.

Hoping things continue to go well for him and keep up the posts.

[Ellen Harris]

Re: Dear hubby's stem cell transplant saga

by Ellen Harris on Sun Jun 12, 2016 3:46 pm

Dogmom,

These will be the hardest days, until he engrafts. After that he should begin to feel better. Don't worry about eating, but be sure he stays as hydrated as possible. I lived on chocolate milk for awhile. I also liked tomato juice and ginger ale. I even drank coke! Water tasted terrible for many weeks.

What is his weight like? He will lose weight during the transplant, but that will be temporary.

Hang in there. He is doing fine. Once that white count starts upward you should see some improvement. I think it is harder when the transplant is done outpatient because the caregiver has to be entirely responsible for the patient most of the day. So it is harder on you. Make sure you take breaks when you can. Since he had a low grade fever earlier, that may be the start of the engraftment process, which really picks up speed once it gets started.

It will get better. You have a strong guy there. He will start to bounce back soon.

Ellen