Friday, March 27, 2009

John's Battle with Zoster

John and I have been in Hershey for the past several days. From Sunday through last night. That's the reason you haven't heard from me. I didn't have time to post because John had six medical appointments, and I of course accompanied him.

Overall, during his appointments this time at his bone marrow transplant center, John fared pretty well. He received better news than we both thought he would. John does have fungal pneumonia, as we suspected, but it has greatly improved according to the report given to us by one of his oncologists. The report was a result of a CT scan John had this visit to his oncologists. It was very reassuring to know he has greatly improved, as fungal pneumonia can be serious.

John has had viral and fungal pneumonia since September 2008.

John contracted the viral pneumonia in Sept 2008 when he was taken off Valtrex, a medication he takes to prevent viral infections. I remember sitting in Dr. Claxton's office last year, as he stated, "You can stop your Valtrex now. I'm sure you won't catch shingles at this point, this far out from your transplant."

So John went off the Valtrex, then promptly turned around and caught shingles! I don't know if participating in the Light The Night Walk, to raise money against blood cancers -- such as Leukemia -- had anything to do with John catching shingles. We were around thousands of people that night. Who knows? He may have gotten shingles anyway, because he was no longer taking the Valtrex.

John at Light The Night
Walk in Sept 2008

A few days after the Shingles started, John noticed Chicken Pox. Yep, Chicken Pox. His immunities had been wiped out by the bone marrow transplant he had had over two years earlier. Those who have a bone marrow transplant literally have their immune system wiped out, and they have to get their baby and childhood vaccinations allover again.

John with Shingles in Oct 2008

So on the last day of September, off John and I went to Hershey Medical Center, because he had very severe Shingles and Chicken pox. We went by ambulance, as I have narcolepsy, and I just can't drive. John was admitted, and we ended up having to stay in Hershey most of October. By the end of the visit in October, before leaving the hospital, Dr. Claxton told John that if he had waited another couple of days to come in he wouldn't have made it...

John said shingles pain was a 9.5
on a scale of 1 - 10.

John was admitted again to the hospital in November for Zoster Pneumonia. The Zoster (Shingles Virus) just wouldn't quit.

John with Zoster
Pneumonia in Nov 2008

John was discharged from the hospital and we got home the last week in November. I spent Thanksgiving and its surrounding days giving John IV infusions of viral medications -- through a port (PICC line) that had been inserted at the hospital -- to try to end the pneumonia caused by the shingles and chicken pox. The IVs were around the clock. There was no time to make anything for Thanksgiving, but we were just grateful to be in our own home...

John getting IV antiviral at home

I'm not real sure why the oncologist (I'm not referring to Dr. Claxton, but an oncologist subbing for him) let John out of the hospital before the pneumonia was cleared up, in the first place. I remember John feeling pretty poorly when he left. On second thought, I do know the reason, I believe, that John was discharged early by Dr. E., but that's a post for another day... I'll tell it later.

During the months of hospitalizations and home treatments, John just couldn't seem to get completely better, and just couldn't seem to get over his fevers and pneumonia. The viral medications he was given orally and by IV weren't improving his health completely. As a matter of fact, John hasn't felt significantly better until this month -- March 2009...

This is because, it was discovered, John also had contracted fungal pneumonia. The doctors were able to ascertain this by the pattern the pneumonia formed in his lungs. John had x-rays and CT scans which showed "multi-focal pneumonia."

Anyway, as I stated, we're thankful that per the report we received, John is doing so much better now. He will have to live with some permanent damage to his lungs on both sides. One issue is scarring. He has had some difficulty breathing, tires easily, and can't take in full breaths at times.

But I'm very thankful John's making great improvements, and it appears that things are looking up from here. I'm glad he's out of the woods!

I finally feel that we are out of a long, long Winter, and Spring has finally arrived.

Love you all, Krissy :)

Saturday, March 21, 2009

Blogging Is In My Blood

I was thinking yesterday about why I hadn't been blogging the last month -- actually why I hadn't been blogging much for the last six months.

The answer came to me. I've been living in stress for six months -- and I almost let this stress drain me of my focus and energy, before I recently became aware of what was happening.

It's stressful living with a Bone Marrow Transplant Survivor. All the ups and downs can be particularly stressful. But I needn't focus on that stress, and allow it to take away my focus or energy. I needn't allow the stress to take away the fact that I want to blog and do other things in my life. I can't let the stress win...

Yes, it is stressful living with a bone marrow transplant patient. I'm not complaining, though. I wouldn't be with anybody else but my husband John. He means the world to me. Perhaps that is why it was so hard when he was hospitalized in October 2008, and then again in November 2008, and we almost lost him a couple of times at the hospital. Since that time, John and I have made frequent trips to Hershey Medical Center, his hospital and Bone Marrow Transplant Center, to take care of his health problems.

By the way, John had his three year anniversary of his Bone Marrow Transplant in January of 2009. When he first had the transplant I was imagining he wouldn't be having these problems at three years post transplant, but now I see it is something I'm going to have to live with. At least for now. He is just one of the survivors who gets many complications. He always has been. And he is always the one to survive against great odds! So I am thankful for that -- that he's a real fighter!

But while I'm thankful, I'm still very tired. That's really the reason I haven't written much -- I've been tired, and I've had a very hard time focusing on blogging, writing or photography. I've had a hard time focusing on just about anything in my life other than medical appointments. I've just been attempting to "make it through."

But it's not going to be like that anymore. It's time to move on. I want more purpose back in my life. I can still help John and focus on goals I have wanted to accomplish for a long time. And blogging is one of them. So I'm back to it.

Blogging is in my blood.
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