Mouth Sores

[KathyM]

Dennis is Day +8.

The mouth sores started on Wednesday -omg - he is suffering - I've never seen anything like it - he can barely speak or swallow. He's got them in his cheeks, throat and lips. He's getting lots of pain meds and he's getting a morphine drip for pain - the nurse said he gets another treatment of anti-rejection drugs on Monday - which will make the sores worse...then they'll begin to get better after that-

I have to say - this is the first time I've seen him this bad - yes, the arthritis and joint pain was difficult - but somehow this is different.

I'm so scared for the future and I can' help but wonder - is everything really going to be ok? This is only the beginning...

The nurse told me last night all this is normal and temporary - and that with the type of transplant he had (mud) they are little more difficult to recover from - and that we shouldn't be surprised if he goes home....comes back to the hospital..goes home..and comes back....to more or less expect this-

I know..one day at time..one day at a time.

[Neil Cuadra]

Kathy,

I'm sorry to hear that the mouth sores hit Dennis so hard. They were awful for my wife too, perhaps the worst physical symptom during her transplant. Swallowing was an ordeal and she had to have regular pain meds for it, until it finally cleared up. Please know that his lips, cheeks, and throat will heal as his immune system builds up again.

I know that you and the nurses are doing whatever you can to lessen this discomfort. (For my wife, popsicles helped a little.) It's tough and you've just got to get through it. I know you will. It may be "normal" during a transplant, a result of transplant pre-conditioning, but that doesn't make it less upsetting to see.

Can Dennis control the dosage of the morphine drip? That can be very helpful both because it puts him in control (only he knows how it feels and his pain tolerance at any given time) and because the relief can be instant, rather than having to ring for a nurse if the pain gets worse.

Think of those future returns to the hospital as checkups. He won't necessarily be back because it's an emergency. And the mouth sores should be a thing of the past.

[Sally C]

Dear Kathy,
I am so sorry for Dennis' pain - and yours. Keep the faith.
God Bless,
Sally

[kwaidz]

So sorry to hear this. My mom had a lot of pain with mouth sores too. She still has trouble swallowing at day +43. Her pain has slowly gotten better over the last few weeks. Milkshakes were the one of the first things she could get down after they took her off of the liquid nutrition. Good luck finding something that works. Keeping you both in my thoughts and prayers.
K

[SLB]

I suffered terribly with mouth issues too. Within a day I went from fine to being unable to swallow! I wouldn't even swallow my saliva & just spat into tissues. Within a day, I was hooked up to a push button pain relief system & TPN feeding through my central line (actually wasn't given choice on this). At first I was upset by the TPN because through 2 lots of induction chemo I kept eating, walking etc, but during the transplant I just couldn't do it. Even with the drugs swallowing anything even ice cream, water was unbearable!! To make things worse, my blood pressure would rise really high & I would get a massive headache then vomit from pain/ high BP. Vomiting was as painful as swallowing! But it didn't last too long maybe 3-4 days of really acute pain (spent in drug induced haze) & maybe a week before my newly made white blood cells cleared up the sores & I was off the TPN. I was told I was very normal & I was still released day +21 after only 3 1/2 wks in hospital even though I was told to expect to be in 6-8 wks. Eating was a struggle for awhile but was put on steroids for some Gvhd & since been eating too much & have quickly put on all the weight I lost (believe me I didn't need it back). So anyway hang in there, it is a long bumpy road & this is just one speed bump but hopefully will quickly pass. Good luck..

Sharnie

[mausmish]

This, too, will pass! I had the sores (mucositis) the full length of my digestive track from head to butt. It was truly miserable for a couple of weeks, even with the narcotics. It does get better! It's now only a dim memory and the only truly painful time during my recovery. There were other issues but nothing so painful. Sending healing, soothing thoughts your way!