Friday, July 8th, 2011
In the past few weeks, I have been having an issue with balance, especially when I get out of bed. The only change in medication that I have had recently was increased dose of Neurontin. Because she thought that that could possibly be causing the issue, she wanted me to take a slightly smaller dose. She is hoping that the new dose will continue to control the neuropathy while lessening the balance issue. She will contact my neurologist, Dr. Snook, to let him know that she adjusted the dose. Time will tell...
(Monday, 6/20/11)I have been feeling quite well lately. There are still ups and downs, but there will probably always be. I have had no problems with breathing and the oxygen machine has been picked up and taken away. I continue on the powerful anti viral Valcyte.
I had mentioned previously that my neurologist, Dr. Snook, had increased my dose of Neurontin in an attempt to lessen my neuropathy. Fortunately, the increased dose worked. I will see him again in a few weeks as a follow up. He had previously identified my "odd feelings" as seizure related auras. I have not had any since last time I saw him and he adjusted my meds.
I have been seeing an ophthalmologist, Dr. Springs, because of the effects of GVHD on my eyes. The biggest problem that GVHD has caused to my eyes is chronic dry eye. He first tried me on Restasis eye drops. They had no effect, so he plugged the bottom drains in my eyes. That procedure made an improvement, but the problem still persisted. At my latest visit, he plugged the top drains. It was great to have tears in my eyes again. Although I am not crying, I often have to wipe my eyes. As annoying that may seem, it is 1000% better than the burn of dry eyes.
I got a two month leave from Dr. Schwartz, so I will see her again in the beginning of July. Hopefully I will not have any issues before then that will require a trip to see her.
(Friday, 5/6/11) Jessica and I drove to Indianapolis yesterday for a scheduled checkup with Dr. Schwartz. My labs looked even better than a week ago and she said that my lungs sounded great. I will continue indefinitely on the stronger and unfortunately ridiculously expensive anti-viral medication. We discussed insurance and medicaid, where she thought I would be health-wise one or two years from now and other big picture things. Jessica and I will talk to a social worker at the hospital soon for more specifics about disability and insurance stuff. Thankfully, I feel back to my normal post-transplant self again.
(Wednesday, 4/29/11) I had a checkup today in Indianapolis with a nurse practitioner at my doctor's office. It was a followup to my hospital stay to check my blood labs and listen to my lungs. The levels of all the "stuff" in my blood were good and the nurse practitioner said that my lungs sounded clear.
Immediately following the checkup, Jessica and I went to another part of the hospital for a followup with my neurologist, Dr. Snook. I was referred to him by Dr. Schwartz after I had mentioned to her that I had experienced three days that I could not recall on the fourth day. I had also been having "odd feelings" that were eerily familiar - the same "odd feelings" that I had eight years ago on the morning of the day that I had two grand mal seizures. The first time I saw Dr. Snook I had an EEG. When I talked to him afterword, he changed the anti-seizure drug that I was on to lamotrigine. I complained to him of neuropathy on my legs and across my entire back. He prescribed a drug called Neurontin. It eases symptoms of neuropathy and as an added bonus, helps control seizures. Since I hadn't noticed any improvement in the neuropathy, today he increased my dosage of Neurontin. The original dose is a very commonly prescribed dose and is slowly increased until improvement is noticed.
Jessica and I also ran into Dr Cripe while we were at the hospital and were able to chat with him briefly. It's always rewarding to shake the hand of the man who started the process of saving my life. I owe him (along with countless others) a debt of gratitude that I could never dream of being able to pay.
On the way home, I got a hankerin' for a Big Mac. We stopped for a late afternoon snack and I ate four Big Macs, fries and a shake. I would have eaten more, but I had reached the physical limitations of space in my stomach. Jessica says that she always knows when I am feeling really good, because all I want to do is eat!
(Wednesday, 04/27/11) Although I missed both family Easter gatherings, Jessica brought me home lots of food from each. I've been eating enough food to choke a horse for the last few days. Of course, the kids got way too much candy and chocolate. People must not remember that the Easter bunny leaves baskets at the kids' house. If people want to get baskets for the kids that's great, but I wish they would put a small gift or something in the basket and take it easy on the candy and junk food. Having two buckets of candy for each kid makes it hard on the parents.
I hope everyone had great Easter celebrations with family and friends. All that I got a chance to enjoy were naps and Easter Mass. Jessica and Natalie looked so beautiful in their Easter dresses and bonnets. Nicholas was sporting a spanking new five piece suit. I was wearing dress slacks with a tie and sport coat. I was shocked to see people in jeans and t-shirts even at Easter Mass! I guess things just aren't like they used to be. I suppose that the fact that those people bothered to attend Mass on Easter is finding good in the bad.
Everything is pretty much normal around my house. Normal, considering the fact that we have a four year old boy running around. My breathing continues to improve daily. Except for the breathing, I feel back to normal.
(Sunday, 04/24/11) Happy Easter everyone! Yesterday, Jessica and I spent most of the day shopping for clothes and groceries and Easter basket stuff. Then we came home and Jessica, Natalie, Nicholas and I walked uptown with our good friends Brandon and Abby, and then back home (about 20 blocks round trip). I was exhausted by the time we got home. Then, that night I only got six hours of sleep (about half of what I need) because we needed to get up early the next morning in time for 7:30 Easter Mass in order to be able to see my brother at breakfast before he left for Pennsylvania. We ate breakfast as a family (with my parents and siblings, nieces and nephews), then Jessica, the kids and I came home to change and get some things for lunch at my mom's and dinner at my in-laws. I laid down for a short nap and ended up sleeping through both chances for food. I'm so disappointed. Now I'm just waiting for Jessica and the kids to get home. I hope they bring leftovers. I think I'll go suck on some oxygen...
(Thursday, 04/21/11) I guess I was being too stubborn about using oxygen. Tuesday night, Jessica said she thought I was going to stop breathing because of sounds I was making while sleeping. I woke up before 5 o'clock Wednesday morning and felt like someone was crushing my chest. I came out and slept on the couch the rest of the night with the oxygen on. I wore it last night while sleeping and had no problems. I use it off and on during the daytime.
The drug that they put me on at home to finish clearing out my lungs is called Valcyte. I was written a script for a one month supply. When I went to pick it up at the pharmacy, they said they were having trouble clearing it with my insurance. After waiting for them to make a few phone calls, they had everything straightened out. I asked why there was a problem and they said the price was above my insurance company's maximum transaction price. I asked how much it was and she said it was over $9000 for the one month supply! Fortunately, I have already met my out of pocket maximum for the year, so the cost was covered 100% by my insurance. Like most people, I don't have that much money sitting around for medication. I think that a lot of people have a maximum lifetime cap of $1 million on their insurance. I am thankful that my Insurance has a lifetime cap of $2 million. I am over halfway to $1 million. The insurance companies make their sickening amount of profits because most people pay more in premiums than they occur in medical bills. You can all be happy that I have stuck it to insurance enough for them to lose money on all of us put together. Now if I could just figure out a way to rape the oil companies...
I am not felling too bad. Mostly just being tired. I slept for 15 hours last night. I didn't get up until almost noon today. Natalie is at school and Aunt Loki is here helping me with Nicholas. Jessica is in Indianapolis today for something to do with school. Doesn't that figure that just when I get home from spending a week there, she has to go.
(Tuesday, 04/19/11) I am going home today. My dad is on his way to pick me up. I will still have oxygen, but they can't make me use it. It will be nice to have in case I get short of breath while chasing Nicholas around. It will be good to be home.
(Monday, 04/18/11) I am posting today from my favorite home away from home, the IU med center in Indianapolis. The story of how I got here...
On or about Wednesday the sixth, I started to get what I thought was an upper respiratory infection, so I started on a Z-pack. By the fourth day, the infection was no better and I was running a fever. Against Jessica's wishes, I wanted to wait to see if my temperature would come down. I was running a 104 degree temp. After 15 minutes it was still 104 and after 30 minutes, it was still 104. At that point I agreed to let Jessica call my doctor. Dr. Schwartz said to go immediately to Memorial Hospital in South Bend.
I spent six days there (about six days too long) and argued with the doctors the whole time. The problem was that they wanted to treat me like a regular patient even though I had special needs because of the stem cell transplant. I refused to let them to do anything other than what had already been prescribed by Dr. Schwartz since they had no idea about stem cell transplant patients. I must have asked a hundred times, "did you okay that with Dr Schwartz?" The main problem was that the head doctor there wanted to be in charge and I insisted that he contact Dr. Schwartz for everything. He didn't like that, but eventually he got it. Mom always told me that "you are your own best advocate." I kept that thought closely in mind.
My health steadily got worse while I was at Memorial and finally on the 14th, Dr. Schwartz decided that if I spiked a fever of 102 or higher that night, I would be transferred to Indianapolis. I've never wished for a fever so much in my life. I got my wish at about 6 o'clock that evening. My fever peaked at 102.9. The doctor came in at 6:30 the next morning and said I would be leaving at 7:00. Around 10 o'clock I was told the docs had changed their minds and I would be airlifted.
Because of ridiculous hospital policies (a whole other story), the helicopter and crew waited until early afternoon when I was able to leave. There was the pilot, a flight nurse, a paramedic and I on the helicopter. The flight was great. I was able to see out the back window at all that was four thousand feet below. The flight took 58 minutes, but seemed much shorter.
I arrived at the hospital and was taken to the BMT unit. I saw many of the nurses that I got to know last year and everyone greeted me by name. It's strange to say, but after being at Memorial, I now felt at home.
From the day I arrived, my health started improving. They were treating me for viral, fungal and bacterial infections while they ordered tests and slowly but surely eliminated things that might be wrong This is my fifth day here. They have figured out that it is a viral infection - CMV (cytomegalovirus). Oddly enough, CMV is also found in rats, African green monkeys (SCCMV), Rhesus monkeys (RhCMV), Chimpanzees and Orangutans (CCMV). This is particularly interesting, because while at Memorial, I had a dream that a rat was in my hospital room and I smashed it with a chair.
I have been on oxygen since I have been in South Bend to keep my oxygen saturation level up. I have gradually decreased the amount of oxygen I am receiving while retaining an acceptable oxygen saturation level. I have heard talk of being released tomorrow. I may need to be on oxygen at home until I can maintain an acceptable oxygen saturation level although if I need to stay a couple of days longer in order to not need oxygen at home, I will do it.
This has been and will continue to be a huge financial burden on my family. I will be probably be unable to work the rest of my life. If you wish to make a financial contribution, read the column to the right. The "Donate" button is a PayPal link to the Danny Beem Benefit Account at Teachers Credit Union. If you click, you will be transferred to the PayPal website where you may donate online. If you prefer an offline method, please read further down the column for the information to make a donation at a TCU. Any donations, online or off, are greatly appreciated.
Thank you so much for your prayers for myself and my family.
God bless you all.
Danny.
