Day +11: The Nosebleed has Returned

Just when we thought we were seeing a light at the end of the tunnel, another bad day comes along. Nurses anticipate patients start feeling “better” around Day +14 so we have a few days to go until some improvement could be seen. To feel “better” does not mean that he will feel well. Healing takes time. It just means that the days will slowly improve. I am praying, as are many others.

Today is rock bottom for the transplant process. Jason has a very low amount of blood in his body today (6.0) so his oxygen level has lowered (because blood carries oxygen), he has trouble keeping his eyes open for longer than a second (literally), and his energy level is incredibly poor (no blood, low oxygen…). Doctors have asked him to stay in bed but he still needs help using the bathroom and eating; this morning he fell asleep as he brought the spoon of ice to his mouth. On top of all of this his nose has started to bleed. 

Without platelets (Jason has a platelet count of 0 today) this is a nuisance as he can feel the blood trickle down his throat, causing nausea. His body attempts to clot the bleed but the clots become large and uncomfortable. Last night he had to go spit out the clot as it dislodged from his sinuses and became caught in his throat, making it very difficult to breathe. If there is an “upside” it is that this nosebleed is still minor compared to others that he has had. His past bleeds have gushed and poured for months but this is a trickle.

I know this story is graphic and you probably wonder how I can handle watching my husband go through this mess. Although I did shed tears this morning because it is emotional to see my husband so… unlike himself, you must understand that these are the symptoms I am used to seeing. This is what Jason’s disease usually does to him. It has been coming and going for years and this is what is happening to him when we tell people we cannot go to the movies because he feels “sick.” These are the symptoms that are present when we skip dates, social functions and family gatherings. I have seen this many times and this is why Jason is having a transplant. He does not want to have to cancel all of his plans because his blood level is too low to walk. He doesn’t wish to avoid activity because he is trying to hide his nosebleeds and coughing up blood.

I am sure that some of you are surprised to read this but Jason has been seriously ill for some time. The last couple of months he was doing better but last year he nearly died, and the year before that he hid a severe nosebleed for nine months while he received weekly blood transfusions to make up for the blood loss.

On the agenda for today: Jason asked me to cancel all of his visitors, and to keep the room warm and quiet. With the low blood amount he is feeling a little cool. Nurses have already given Jason one transfusion of platelets, and increased his dosage of Amicar, a drug that supposedly helps hold onto the platelets you currently possess. Another bag of platelets will be arriving soon, and then a third unit this evening. He will be receiving three units of blood today so I hope that lasts a while. Basically, Jason will be sleeping and dabbing his nose when necessary while receiving treatments and transfusions.

If you would be willing to pray for us, please pray for Jason’s nosebleed. That bleed is actually the only event that has been unexpected and it is not safe. Pray for it to be healed and for his recovery to begin.

Looking forward to sharing good news soon!