Day +29: Welcome Home

It's been a long few days.

This past Friday, on Day +24, Jason was discharged from the hospital. It was an emotional day and made for a very busy weekend.

On top of Jason coming home late Friday night, he also wanted to take the time to see family at the weekend Easter party. It was a great weekend and he even got to meet his new nephew. Now we are trying to rest and play catch up.

Since coming home there have been a few challenges. Jason's kidney function tests were not so fantastic the last time they were checked. I basically forced him to drink as much fluid as possible to help them. On Tuesday we had a doctor's appointment and they said that his kidney function is doing better. Apparently the fluids are helping.

Then, he needed to go on lots of walks for two reasons: his platelet count is in the millions (you read that right), and his lungs were filling with fluid periodically and he had a lung infection. With millions of platelets Jason is at risk for blood clots so the walking helps that problem. However, if his platelets do not start to slightly decrease he could be susceptible to bleeding. It is strange but when your body has too many platelets they can actually work as though you have too few platelets and then be at risk for bleeding. On Tuesday's appointment the doctor said that Jason's lungs were sounding better and better.

The past two nights were a lot better than the first nights. Neither of us got any sleep since Jason had constant low-grade fevers throughout the nights. His discomfort and sweating was tough to handle and if the fevers were to have gotten any higher then he would have had to be readmitted to the hospital. This is not uncommon but wouldn't have been welcomed after we had just returned home.

On Tuesday's appointment we discovered that the CMV virus in his stomach is decreasing so he will continue to be on that anti-viral medication with no changes to the dosage. His Tacrolimus level is not too high, and he is feeling OK overall.

It will be an interesting few weeks and months and year. The atmosphere at home is a little stressful because symptoms usually arise from seemingly nowhere. The past few days he wakes up needing to vomit some clear fluids but the rest of the day is semi-uneventful.

For now we have been warned repeatedly to avoid all crowds, any sick, any exposed to the sick. I am to clean the house with disinfectant often. Usually I wipe the counters, doorknobs, light switches, faucets, sinks, remote controls, phones, steering wheel, etc. Plus, I do the laundry in small loads to avoid any dirty clothes floating around. Pillowcases and sheets are changed daily (no, I did not change them every single day before this, I am not THAT impressive). And there are many changes to the foods we eat and how they are prepared. But overall we are doing well.

We do not have any results from the bone marrow biopsy that was performed last week but we are hoping that when we hear news it will be good news, that Aaron's marrow is producing and just taking its three months to a year to slowly take over.

I have been trying to finish personal projects but I have mostly been helping Jason, which was expected of me since the beginning. I was told that, as caretaker, I would be with him while he was in the hospital, and at least the first month home.

At this stage in the game Jason's biggest "problems" have been that he doesn't like the high volume of medications he has to take (it's a lot). And he feels weak when he walks for a little while but that has been getting better with every walk he takes (we take three walks per day, about 1/4 mile each). He also deeply misses his hair and beard and often wears Winter hats because his head is very cold. I have never heard him complain about being cold but this past week he has constantly needed heat sources and blankets. I have no problem with heat so I am enjoying this time that appreciates it because I know that soon he will want the A/C and then I will be living outside. Lastly, he finds it hard to sleep at night so he has to take numerous naps throughout the day to make up for the sleeplessness which he attributes to the medications.

Hopefully things will continue to go this smoothly in the future. We continue to pray and hope that this be our new beginning.

Day +22: Biopsies and More Biopsies

White Blood Cells: 7.2

Hemoglobin: 8.8

Platelets: 669

Neutrophils: 1,500 (1.5)

Another long night at the hospital when Jason’s oxygen level dipped into the 80’s (percentage). Even with deep breaths his lungs were still unable to reach 90% so the nurses had to put him on oxygen. I wondered if maybe more fluid had entered his lungs; he had gained three pounds in one night and it got me curious.

After a long morning walk Jason had to get a bone marrow biopsy (his millionth biopsy, perhaps?). He is normally not bothered by a biopsy as long as doctors promise to drug him until he is asleep and numb. Apparently it is easier for an older person to undergo a biopsy; we were told that many elderly persons do not even require anesthesia.

Jason has a high level of creatinine in his liver and it caused his body to retain the anesthesia for a longer period of time. Normally Jason would be awake after an hour or two but Jason has slept since 11 AM (It is now 8:30 PM). He has difficulty keeping his eyes open and he is supposed to be walking and practicing breathing techniques in order to clear his lungs and get his oxygen level back up above 90%. Jason has been using an oxygen source all day to make up for the lack of oxygen in his lungs. Also, the doctors discovered that it is this high creatinine level, and a reaction with the antibiotic that explains whey Jason's Tacrolimus level is still so high (even after days off of it, and halving the dose three times). This is the answer to the weeks of headaches.

Whenever we get out of here Jason will be required to get bone marrow biopsies in his lower back once every three months for a year. After that, if all is well, he will be asked to get a bone marrow biopsy once annually. In the meantime the best thing he could do would be to walk, walk and walk some more. That would get his lungs to expand and then he would be able to remove the oxygen mask but it is pretty tough to be walking around when you are still tired from anesthesia.

Doctors also performed another chest x-ray just to be sure that his lungs are clearing up. The preliminary results would say that his lungs are not much better but they are not any worse. Walks will change this, as well as the antibiotics that are hopefully working. Today they mentioned a bronchoscopy to determine the exact infection in his lungs. Now that Jason’s platelets are so dramatically high they could perform this procedure without fear of bleeding.

Hopefully tonight Jason’s oxygen will be at an OK level and he can get some sleep without much concern for his lungs. His last oxygen level was still in the 80's but he has lost two pounds in one day so I am hoping that he lost some of the fluid in his lungs.

On a lighter note, I asked Jason which item he most looked forward to sitting on when we got home: the reclining couch, his fancy reclining, swiveling extra-padded chair, or our bed. He said he was most looking forward to sitting on the toilet in his home because no one would be asking him questions about quantity, color and consistency.

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!