DOT +51

I am back at the apartment! Doing better with my kidney functions better and potassium lower. They are keeping me on several iv antibiotics and one iv antiviral that I can get at the outpatient clinic daily.

Laura and I are both glad to be settled back in. We have an appointment tomorrow morning at 8 to see the next round of labs. There is a good chance I will need some more blood in the morning. (the antiviral medicine does that)

They ordered another test to see how the virus is going. The results show how much is there so we will have a better idea of how long to stay on some of the medicines.

Thanks for following the blog! Hoping to put some good news here soon....

DOT +50

I am still in the big house and will be until at least tomorrow. Great news is that my potassium has gone back down to the high part of normal. Anything with normal in it is great! I am still here mostly for observation because of my high potassium. They really don't want that to go back up.

Both the kidney doctors and the infectious disease doctors have been by with their team and they agree with the course that my doctors have taken. To continue to treat this virus with the particular drug and to raise some medicine to bring the ph of my blood back to normal.

The one piece that has worried us is the graft. They did another graft study yesterday and it will take about a week to get the results. Some doctors say this virus can cause a problem with the graft. Dr. Chao came by this morning and he said if it has hurt the graft, a boost of johns cells could help. But time will tell. The good piece of news is that my graft came in strong early so we pray that it is strong enough to hold on. There is not a lot of studies on this virus so the doctors are not committing to much.

Hoping to get back to the outhouse tomorrow!

Thanks for all the text, thoughts, prayers, and calls!

DOT +49

Sorry for the lack of post but things have been busy. I'll try my best to catch everyone up from what's happen the last week.

For several days in a row my liver function studies started to rise. The docs decided to do an ultrasound last Thursday and it showed some blockage in one of my ducts around my liver and gallbladder. It could have been a stone or just some sludge. (Laura said I was trying to copy her and get gallstones...haha)

So on Friday morning we get to the clinic and they have a scope scheduled that day to go down and try and look to see what is blocking it and also grab it if they could. BUT, for once in my life, I did something medically on my own and passed whatever it was. Friday morning my liver function studies were all much better. So they canceled the scope and did an MRI. (I hate those things!). The MRI went well and it was all normal. So nothing further needed.

Monday we showed up to the clinic and we find out I have a virus, this one is called hhv6. A lot of people have it in tiny amounts that stay dormant, but when you are immunosuppressed like I am, it can multiply and become a problem. With that, they started me on an anti-viral medicine.

A few hours after my first dose of the medicine I started to get chills and spiked a fever. So Laura and I headed into the hospital and I got a dose of iv meds, blood cultures, and was monitored for a while. I started to feel terrible so they kept me overnight for observation.

This morning my counts did not look great. We expected some of this because the anti-viral medicine can cause your counts to dive. But my potassium started to get high (6.0) and my kidney function studies again went high. I just met with the kidney doctors and it looks like my kidneys are not disposing of potassium like they should. They are giving me some bicarbonate to help bring the ph back to balance in my blood. The kidney docs are coming back so they might have more suggestions. Potassium getting high in your blood can be dangerous, so I am glad they have acted so fast. I feel confident it will be back down soon.

So I will be in the hospital for at least tonight, maybe more. I think some Infectious Disease doctors are coming soon just to make sure the fever last night was not from a bacterial infection or anything like that.

Today is dads birthday and he was great to come up this morning and spend some time and bring me breakfast. Happy Birthday Dad!

Believe it or not, I look pretty good considering all of the above. The only time I felt real bad was during the high fever. Now if this virus can go away and my kidneys can start doing what they should, then we can go back to just worrying about my spleen.

Thanks for all that follow the blog!!! This will all pass soon and we will be back in Greensboro!

DOT +41

The doctors still think I am doing great but my counts right now are not as steady as we would like. This is due to my spleen infection that I had in 2010 and how my spleen is still enlarged today.

They think my marrow is producing what it needs at this point in the transplant but my spleen is soaking all the blood up and keeping my counts low. On Friday my hemoglobin was real low so I needed another blood transfusion. Today it was 7.9 so they did not give me another transfusion. (normal protocol is a transfusion is needed when the hemoglobin is below 8 but due to my spleen, they let me go to 7.5)

We get tomorrow off and it looks like we will start to get several days a week off. I am feeling good but my appetite is still struggling. Now is the time when patience is the most important thing. We will have to wait out these counts getting better and then we can go home. Right now, it's too hard to give a good guess on when that will be.

Thanks for all the prayers, emails, calls, text, and cards!

DOT +36

We are heading in the right direction and my counts continue to do well. They still have a long way to go before they are considered stable, but they are good enough to get the day off from the clinic every once in a while. Today we have the day off!

They dropped a couple of my medicines yesterday and will be talking this week about dropping some more. I now have some of johns working cells so they are confident those cells are working and are beginning to do their job.

I am still on a lot of immunosuppressment drugs, so infection is still a big worry. The immunosuppressment drugs target a specific part of the immune system to prevent graft versus host disease. But good news is that the other part of the immune systems are working well.

Bringing me down from all these drugs can be tricky. We want to leave the drugs that support the suppressed part of the immune system and then take away the rest that are not needed. That will take all the doctors putting their minds together to make sure we do it right.

Otherwise, Laura and I are doing well. These days off are nice because we have been going to that clinic everyday since early January. I am still not eating much, but hopefully my appetite will come back soon.

Thanks for all the support!

DOT +31

Today the other "line" of the stem cell test came back. It too was 98% donor! This test was not as important because my defect was in the first test. So if the first one was fixed, we were good to go. But it is nice to see a full graft coming in.

The last few days I have had some stomach issues. They did a few test for some infections and so far so good. They are also leaning towards doing a scope down to my stomach because some of the symptoms are similar to the graft versus host disease. But the last 24 hours have been good so I think they will wait a while for that.

They gave us the weekend off from the clinic! Our first one in a while so Laura and I are not real sure what to do. Haha. We are so used to just getting up and heading to the clinic. But it will be nice to just relax this weekend. If at any point I start to feel bad, they said to just call and come in.

The news this past week has been what dreams are made of. But even more so, was to see all the support and cheering everyone has sent to us. We have been flooded with post, text, emails, and calls; and it has been amazing and put many of smiles on our faces. We are lucky people to have such a great support group pulling us through. I know Laura and I are ready to get back to Gboro and we will be there as soon as we can!

Home Stretch

Burns,

How you found the courage to go through all this twice is beyond me.  I’m going to email Webster's and tell them to put a picture of you next to their definition of PERSEVERANCE.  You and Laura have been through HELL and you both deserved every bit of the good news you got Friday night.  There hasn't been a minute since January where I haven't thought about how you are doing and this won't change until the day you turn in your keys to the apartment in Durham.

Keep hanging in there.  You'll be home soon.  We have lots to do.  

I would have given you my last stem cell if they would of let me.  

Love,

Your Brother

DOT +26

Friday night at 7 pm, I got a call from a PA at the bone marrow clinic. My first thoughts were not good because they never call. It was Peggy and she asked for me to sit down ( so I did). She told me that one study had come back and the results show a 98% donor cell population! The graft has set and is working! Wow, was that incredible news. She did not know much else and said we could find out more over the weekend.

My counts were good Friday so they let us have the day off Saturday, which was fun because Laura and I love to watch the Derby so we had great tv all day! Todays visit they were very pleased with the results but also said to be cautiously optimistic. We are still in the early stages and things change fast. But the fact that there is so much graft, is wonderful!

So now we continue our day to day routine. Today my hemoglobin was 6.5, the lowest it has been. I received two units of blood and a lot of magnesium. My WBC keeps going up and down, but that is to be expected in these early stages. I am still having fevers most nights, but they are very low and nothing has grown out of the cultures.

Right now my blood counts and graft versus host disease (gvhd) are the two areas of focus. Last transplant there never was much of a graft, so we did not worry about gvhd. Luckily, this time there is a graft so we need to be looking out for that a lot.

This news is simply amazing! To see this process really start to work is unbelievable. To be honest, I am not sure if it has hit me or not. Or more so, if I believe it or not. Maybe that is my mind protecting myself from another letdown. But the test showed the numbers and Dr. Buckley's friday night email giving us an "attaboy", means the world to us!

DOT +22

Today I finally got a central line and that is a big help going thru all this. It allows them to draw blood and speed up a lot of these strong antibiotics. Also, it is easier to manage at home.

My fevers are still around but all very low below 100.5. Some Tylenol and I start to feel better. Again, they think and hope they are coming from the graft coming in.

My appetite is up and down but we are trying hard to keep eating. I know when I eat I feel better, but sometimes it's easier said than done. Laura has been perfect with giving me a little push to eat but not too much. I bet she had no idea she would know so much about all this stuff! And she does!

I am still on 2 strong iv antibiotics that they would like to stop but first want to see if there is any graft cells. (johns cells) the graft cells would help fight infections.

So they have taken some blood and we are not real sure when those results will be back. Maybe Friday or first part of next week. They did 2 different types of test, one was the regular graft study, and the other is one special for my illness.

Otherwise we are hanging in there! My counts are doing as expected and we just pray and hope the graft still is working hard!!

Thanks for all the prayers, thoughts, cards, and encouragement!