After what feels like six months of winter, I think spring has finally sprung. The days are definitely longer, brighter, and warmer. Now all we need is some green grass and colorful flowers.
As for my health, there are just a few updates. Most importantly, I hope to FINALLY get on the kidney transplant list on Monday. I have been jumping through hoops for about six months now seeing doctors, dentists, a psychiatrist, surgeon, attending meetings, etc. Prior to getting a transplant, one needs to be cleared by every entity, and as most of my body parts have been affected by VHL, I had to be cleared by every physician and have every area managed properly. I even had to have a crown and a filling fixed. It's all so petty and frustrating. But, I have made it through everything, even the psychiatrist (LOL), with flying colors and I'm hoping to begin my 5-6 year wait as a transplant candidate ASAP.
My kidney function has been the same, 15-17% of use including both kidneys, and I can avoid going on dialysis so long as it remains above 15%. I hope I can stay above that mark as long as possible as dialysis sounds like no picnic at all. The only type of dialysis that the medical team approved for me is hemodialysis with a port in my chest. I can't use a port in my arm or leg due to my history of blood clots, and they feel my veins are too small to even create a grafted access. The reason it's important to wait is because the risk of infection is very great with the catheter so close to the heart. In addition, it will require me to go to a clinic three times a week for 4-6 hours to rid myself of the toxins. Due to my lack of vision, I am unable to do home dialysis.
An accidental development has me hearing like a teenager again. Suzanne suspected I was experiencing hearing loss in my good ear, so we asked my doctor about that and whether it might be causing my balance issues. Suzanne was right on both counts. My doctor sent me to an ENT doctor and the audiologist found mild hearing loss in my right ear and verified the deaf left ear. A new device came out since I last saw an audiologist and I got it on Good Friday. It's called the CROS, a hearing aid for single-sided deafness, and my model just came out this week. I am now wearing a receiver on my deaf ear and a hearing aid on my hearing ear, with a very small tube laying within my ear canal. Both units are very lightweight and they use watch-like batteries as a power source. Basically, the sounds from my left side come in and get so filtered from my left ear to my right that it makes my brain know that the sounds are coming from my left, even though I hear them on my right. It also distinguishes my normal sound coming from my right side. Though it sounds too good to be true, it works just like they said it would. I'd not heard from my left ear in about 35 years and now I feel like I'm hearing from it again. It is so incredible - I didn't realize how much I had been missing. Now I need to overcome my bad habit of turning my head aside when people talk to me, as I no longer need to point my good ear toward the sound. Once that changes, I'll appear to have better eye contact.
We are setting the CROS at half power strength initially as I have not heard in my left ear for so long, and she is afraid I'll be overwhelmed with the amount of sound, especially without having vision at the same time. In a few weeks they'll increase the sound to normal range. I can wear these devices around the clock except to sleep, shower, and swim. The crazy part is the battery usage. Even though you turn the CROS off when not in use, the batteries still need to be changed every week. I can't fathom how much that will cost. I think I'm going to buy some stock in a battery company.
In addition, I ordered a Bluetooth accessory pack, which is so cool. It allows me the ability to watch TV and turn the volume up in my hearing aid, while letting everyone else watch at a normal volume or even mute it. I will adjust the volume by a control that only I use. In addition, I can use this Bluetooth option rather than earbuds for my iPad, iPhone, ebooks or any WiFi devices, and all the sound will go right into my ear once they are synced. The doctor tried to sell me an older CROS package for $1,000 but I got a newer set for half the price.
My skin is pretty much unchanged but the issues are getting a little better. Hopefully now that spring is coming and it's not as cold out, my skin won't be as dry. GI-wise, I lost another five or so pounds but I think it's kind of leveled off. I'm trying to eat smaller snacks and graze throughout the day because my stomach fills too fast.
Sadly, I'm still very fatigued. That's probably one of the biggest problems that bothers me. I can't stand that I require so much sleep and that I have no energy. It's so not like me. I still look forward to fun plans out with friends, but otherwise I've become more of a homebody than I ever thought would be possible. It's hard for me to get started now, but once I'm out and moving, I get better.
I saved the best health update for last. I really had been thinking about stopping my eye treatments once I start dialysis, as it really hasn't been helping me much lately and it hurts to get the treatments. But, this past week, in the late evening I once again got my vision back so good that I was able to read print on my phone, see myself in the mirror, see my clothes, the slats on the window blinds, little buttons, all the bottles on my bathroom counter, my arms, nail polish, hand, fine details on a leaf - it was so remarkable! If I can see that much, even though it's only now and again, then my eye must still be capable of sight. I'll see my doctor in the next week or two and have him take photos and see if he sees any change. Even today I can see my hand and my nail polish again. I also noticed I'm getting more light into my eye. It's not as dark as it used to be. It's brighter and the shadows have been better. I don't know if something is going on internally and why, or what I am doing differently, if anything. All I know is the pressure on the tumors has lessened enough to let some vision go through. So, at this Easter season, please continue to say your prayers that there can still be a miracle ahead for me and that one day I may get more than just an hour or two of vision here and there, and may be able to actually have usable vision and see my children's faces again.
As for some excitement, I took a trip with Sheila and Barry in February to Hollywood, FL (next to Ft. Lauderdale) for four days of fun in the sun, although one day we had torrential rain and could have swum in the streets. We stayed at the beautiful oceanfront Diplomat Resort & Spa. Our room was nearly as large as the first floor of my house but without a kitchen. We had breakfast buffets every morning and the pools, hot tub, beach, and a choice of five restaurants. In addition, we found an incredible four-story Italian restaurant down the block called Sardelli's and ate the best Italian food I've had in my life. They said they're going to open one in Glenview. It was so good to visit and spend some quality time together. Sheila and I even took a trip to the mall during the rain storm to see 50 Shades of Gray. And what a mall it was - it had six anchor stores and a caviar kiosk, and we almost got stuck there because taxis were so much in demand after the rain.
We just finished spring break. First Tyler had a week off and last week Alyssa was off. As a family, we all went to the Kalahari in Wisconsin Dells for a one-night water park adventure. Everyone had a ball. Believe it or not, I rode the water rides without the vision. It was a little different but quite fun. They even had a roller coaster water slide that was probably my favorite ride, and I don't think you even need vision for that one - there is so much water splashing in the eyes anyway. They have a separate pool for surfing and both kids tried that but neither one got up, unfortunately. Another water ride you stand on, a door in the floor opens, and you fall straight down and eventually brake with your feet. Another has a floor drop into a tube that twists around in the dark, almost upside down, and again you brake with your feet. They also have a live white tiger cub and you can take pictures with him, and there's a movie theater, bowling alley, and five restaurants.
Because I love candy, my kids will always have Easter baskets. For Easter, our kids decorated eggs and then hopped around in search of their baskets on Sunday - even Tyler at age 19 and his college roommate Phillip. It was more like a scavenger hunt because they each gave each other clues to follow. Phillip's mom sent us Maggiano's gift certificates, which we used on Good Friday for dinner, and flowers that are so beautiful. We also had a nice Easter family dinner together.
I have a new hired helper, Liz, who I probably mentioned previously but now she's more regular. She comes every Wednesday for about 5-6 hours depending on my needs. She's been super helpful to me as she is teaching me some typing skills, helping me with computers, organization, odds and ends around the house, and will take me to local doctor appointments and errands. She is a Social Work major and she guarantees she'll stay with me for two years while she completes her degree. She just so happens to be my cleaning lady Maria's daughter.
As usual, hats off to Suzanne because I wouldn't have gotten anywhere without her. As you can see, I've had to go many places in the past few months as I jumped through the hoops for my transplant and my medical needs in general. Lately, Suzanne has been driving me to most of these appointments on her own. We keep thinking it'll slow down but it doesn't. Also, thanks to Delynn for driving Alyssa, and to Angela, who is my nail and movie partner.
Thanks also to all of those who came out or took me out these past few months, which includes DiTy, Patti, Nancy, Missy, Mindy, Lori Pritchett, Carrie, and my blind friends Vanessa, Juan, Christa, and my newest blind friend Judy. I apologize if I'm missing anyone. Every visit is so appreciated.
I hope next time to have news of getting on the transplant list, or better yet, an actual transplant (ha ha). Wish me luck!
