Hip Hip Hooray

Mid September of 2011, my mom and I had made it safely back to the United States from Germany where I had met my 2nd bone marrow transplant donor.  When we arrived at the Newark Airport the weather was awful and our flight to North Carolina was canceled. The airline reserved a hotel room for us along with transportation to the hotel. I wanted to take the unexpected extra time to visit New York, but we decided not to go out because of the heavy downpouring rain. I had only packed enough IV fluids for the exact number of days we would be gone, so I didn’t have enough for an extra night. The following day the airline picked mom and I up and shuttled us back to the airport. Flying out that day was up in the air….no pun intended. Thankfully, we boarded the plane for a flight home. Unfortunately, there were delays and we sat on the runway for hours. Even I was getting impatient. Finally, the plane took off and we were home that night.

After a few days of rest and recovery, it was time to get back to the doctor and start planning for another surgery. It had been six years since my first hip surgery, a fibular graft, and now my right hip was in too much pain to tolerate. I was walking with a cane, using a wheelchair for long distances, and staying off of it as much as possible. I really did not want to have a hip replacement, but I could not take the pain any longer. I have been in so much pain over the years from various things that I have an extremely high tolerance. With my hip pain, I finally gave in and told myself – you do not have to keep fighting this, you do not have to hurt, you are going to need the surgery eventually anyway.

In Nov 2011 I was admitted to Duke Regional Hospital to have a total hip replacement at 28 years old. The doctor I see for my hips worked with UNC sports teams and had actually performed Dean Smith’s hip replacement surgery. The surgery went well and recovery was much better than my previous hip surgery. Doctors perform hip replacements differently. The way my doctor does his surgery required a specific recovery process. That included eight weeks of lying flat on my back. I could sit up 30 minutes twice a day in a chair, and walk as much as I wanted. He did not want me laying back in a recliner because of the angle of pressure that would be placed on the hip. Flat in the bed or on the couch is where I was for eight weeks. During this time, I was also still doing my IV fluids, so I was juggling my IV bag with a long IV line hanging out of my chest while navigating on crutches. I was able to put weight on both feet, but for the first several weeks I had to use crutches until the doctor allowed me to advance to a cane. A physical therapist came into my home to teach me range-of-motion  exercises until the eight weeks were up. Then I was able to go to the Wellness Center for more physical therapy.

I was weak going into the surgery and this only knocked me down a few more notches. The Insurance company usually determines how long your PT lasts. I was getting stronger; however, I was not allowed as many visits as I thought I needed. I had zero pain in my hip the day after surgery. I think I took a couple of Tylenol that day and that was all.  I never had any pain, and I still do not today. Between physical therapy, my BMT doctor, my eye doctor, and kidney doctor, we were still traveling back to Chapel Hill and Durham frequently. My orthopedic doctor had me walking with a cane until my limp was gone. He said using a cane could prevent more damage and prevent me from having a permanent limp. I did what the doctor instructed, got stronger, and a few months later you would never know I had had my hip replaced.

I do remember going to my granddad’s and my daddy’s at Christmas and taking up the entire couch lying flat on my back. That is when everybody in the room takes their turn to ask if you are okay, and if they can get you anything. That was so nice and thoughtful, but it added up to a lot of “No thank you, I am okay”. It did get me out of sitting in Santa’s lap at my granddad’s.

I realized that my hip was so much better after the surgery. If anyone is in pain with their hip and putting off surgery, just do it. I figured out that there is no need to live in pain if you do not have to. I know the decision to have a major procedure like surgery is a tough decision, but most of the time it is worth it in the end. We do not have to suffer every day with all of the medical advancements there are today.

Dankeschon

2011, eight years after I was originally diagnosed with Leukemia, was a busy year. I should have had UNC in my rear-view mirror. Still, I had so much going on. I had been doing my daily IV fluids for a year and now one of my hips was beginning to hurt. I knew it was only a matter of time. The doctor who had performed my fibular graft hip surgery in 2005 said there was no guarantee on how long the surgery would last. The goal of the surgery was to prolong a hip replacement. I was only 22 years old at the time, and that was mighty young to have a hip replacement. Hip replacements are not good for a lifetime either. In the meantime, I walked with a cane, took pain meds, and sat as often as I could to delay hip replacement surgery as long as possible.

 Since 2006 I had been corresponding with my second bone marrow transplant donor almost daily. She lived in Germany and was six hours ahead of our time. She worked in a hospital as something similar to a surgical technician. We had to carefully plan times to talk while we were both awake and she was not working.  My schedule was usually open since I was unable to work at the time. We would email and talk through yahoo messenger or chat. At the time yahoo did have a drawing feature we could use if we needed to because of the language barrier. I remember drawing a stick person and circling the hip area because she did not know the English word hip. I of course did not know any German, but she did know enough English for us to communicate. In 2006 when we first communicated, technology was not as advanced as it is now. I sent her gifts randomly, and I knew eventually I wanted to meet her in person.  By 2011 I was ready to visit Germany.

 Mom and I got our passports and I planned the trip. Germans go on holiday and use all of their vacation time all at once. During the month of August my donor, Sabine, was going to be on holiday. She lived on the bottom level of a flat. Her neighbors above her were on holiday also, but were going out of town. They were gracious enough to let us stay in there flat as long as we fed their cat.

 I was still giving myself the daily IV fluids so I had to call the airline and get approval and directions on how to take it on the airplane. I was in a lot of pain due to my hip and I had to take a wheelchair. We made it to Germany after a 14-hour flight with all the medical supplies and equipment in tow. We had a great time! Sabine had something planned every day for the entire two weeks we were there. We visited Munich, castles, historic churches (older than anything we see in America), small towns, and so much more. Her family was wonderful. Sabine had even planned a family and friends BBQ at her house as well as a celebration with the Bone Marrow Donor Program at a local castle.

 During our time in Germany, I cruised the streets and subway in a wheelchair. As soon as I returned home, I had a hip replacement scheduled for the end of the year. I did not let it stop me. I carried my IV along on the adventures and made the best of it, even with my visual impairment. I couldn’t see everything in Germany especially in the dim lit older churches. I had a flip video camera that was popular at the time, and I looked at the screen of the camera to see most things. A flip cam was small like a smart phone only thicker. I could see things better on the screen because it was small and bright.

 Sabine did so much to celebrate me while we were in Germany making my time memorable and wonderful when she was the one who needed praising. Words can’t express the gratitude and thanks I have. I would love to go back and visit again…with a translator. For now, my goal is to meet my first BMT donor that actually lives in America. He has now moved to South Carolina from Michigan, but with COVID it has been a challenge to get together. 

 2011 ended and I had been to Germany and had a hip replacement all while doing a daily 3 hour IV with low vision. When life gives you lemons, make some lemonade.  Don’t spiral into a black hole of depression or destruction. Push through with what you have and don’t dwell on the bad things. Negativity will get you nowhere. Faith Over Fear. He’s got you and with Him you can get through anything. No need to worry.

 By the way, the title of this story, Dankeschon, means “thank you” in German.

What Could Be Next?

In 2009, I had finally graduated college, but what was I to do. I had lost a large portion of my vision, could not drive, and I was still going to UNC quite often. Who would hire someone who could not see plus would need to take a day off every week for appointments? I knew at that time finding a job would need to be put on hold for the time being.

Since 2003 lots of strong medications had circulated throughout my body including chemotherapy and radiation. It had taken a toll on my kidneys, and doctors were keeping a close eye on my lab work. I couldn’t tell any difference in the way I felt, but the damage was happening quietly inside my body. To help with the problem, my kidneys needed to be well hydrated. It was so hard to drink the amount of fluids the doctor recommended to stabilize their function. If I drank too much while eating, I couldn’t eat much. If I tried to drink a lot any other time, I would get nauseated. If I threw it all up, that was a waste of everything I had just tried to drink.

Sometime, I think, in 2010 my kidney doctor felt like he needed to take a closer look. Like I have said before, if anything was going awry, a biopsy was ordered. So, what did he want to do? You guessed it, a kidney biopsy. The night before the biopsy, I couldn’t eat anything after midnight. The procedure was scheduled first thing that morning. My mom and I woke bright and early to get on the road and head to Chapel Hill, hopefully making it through Raleigh before all of the work traffic. We made it there safely, got checked in, and got settled in my pre-op room.  I undressed and put on the trendy hospital gown that wraps around me twice, and anxiously waited for the doctor.

Some time had passed when the doctor entered my room. The look on his face was not very encouraging. He sat down beside me stating he had some bad news. This doctor was my regular Kidney doctor. He was not someone who only did the biopsy. He knew me and is still my doctor today. My doctor proceeded to tell me he was unable to do the biopsy on that day. I did not know what was happening. He continued to tell me in a gentle manner that the cortex of my kidney was to thin, and doing a kidney biopsy was more of a risk than he was willing to take.

To do a kidney biopsy, ultrasound is used to guide the doctor to the best location of the kidney to insert the biopsy needle. He had reviewed my ultrasound and noticed the area he would need to enter had thinned out significantly. It was too dangerous. Doctor H then uttered the last words I was expecting to hear that day – “your kidneys are failing and you are going to need a kidney transplant”. Stunned, I ask, “are you sure”? “Is there anything else that can be done?” He proceeded to explain to me a kidney transplant was not in my near future, but eventually I would need one.

Hearing that news was hard. I had not cried when a doctor had given me bad news previously, not even the day I was diagnosed with Leukemia, but I did that morning. I was finally getting well, hopefully starting to live a normal life, and now something else is happening. At that point, all I could do was get dressed, listen to the doctor, and move forward.

Because my kidneys required more fluids to function the best they could, my doctor ordered one liter of fluids every day intravenously. Thankfully I was able to do this at home. At that time, I think I had had my central line removed from my chest for a few months, and a new one had to be placed to receive the fluids. I had what was called a Hickman. It is a catheter placed in the chest. The line then goes into a large vein. The insertion point of the Hickman was not supposed to get wet although I did in the shower. The dressing had to be changed three days a week. This is the same type of line I had placed the day I was admitted into UNC back in 2003. They were able to remove it for a short period after my second bone marrow transplant until I needed another one with the kidney failure.

The fluids I needed to give myself were daily. I usually hooked up to them as soon as I woke up, and had it finished by lunch. UNC would deliver the fluids and supplies every Friday. I had a pump that was small and fit into a backpack type bag. It was portable but I felt like I had to sit in one place while it was pumping. It took 3 hours every day to get the entire bag of fluids. The daily fluids were ordered to be given for as long as they could delay a kidney transplant.

For years I woke up every morning and hooked myself up to a 3 hour IV. Yes, it was aggravating and the line hanging out of my chest was the worst, but it was just another thing, another bump in the road. If I wanted to go somewhere, I would just pick it up and take it with me.

Doctors tell patients every day, don’t eat sugar, don’t smoke, drink, or over eat. If you are unable to see the silent damage these things are causing in your body, you have the tendency to keep consuming them. If we cannot see the damage or feel the damage, we seem to think everything is okay. That is not always the case. The doctor told me to drink plenty of water and I could not do it. I could not stop the damage by drinking more but I might could have prolonged it. Protect your body, liver, kidneys, and lungs. Take care of yourself. I did not have control over my health issues, but some people do. You will wish you had done more after your damage is irreversible. Have Faith. Stay strong. Be at peace.

Turning the Tassel

I did it! I finally graduated college. In May 2009 I earned an Associates in Applied Science in Business Administration as well as certificates in Human Resource Manager, Office Manager, and Accounts Receivable/Accounts Payable Clerk. It was not my goal upon entry into college back in 2001, but it was a second option when deciding what I wanted to do. This accomplishment took 13 semesters of college classes with a lot of hurdles, but I never gave up. This final attempt with my vision loss put a whole new level of difficulty on school. When I would schedule my classes at the beginning of each semester, I would take into consideration the fact that other people would be taking me. I would try to schedule classes on the same days and fewer days a week. Usually, my mom would take me to school. My dad worked very close to the college and could pick me up if I had a long break between classes, and he would take me home after class. My grandma also lived close to the school so I could go to her house if I had long time periods between classes.

I remember one day, I was walking to a class, taking the same route everyday. I would always cut through the area where the business/administrative offices were located to get to the elevator. With my vision loss, remember, I only have the small central portion of my vision. When walking I usually am looking ahead of me more towards the floor where I will be walking. That day I opened the door that the staff kept closed at the administrative offices, walked through, and BAM,  I was hit in the face. What in the world is that I thought? It scared me to death. I jumped and ducked and looked all around, moving back and forth. When I settled down, I looked in the area where I thought this thing that hit me in the face would be, and I saw it. It was a carboard spider hanging from the ceiling by a string. The staff had decorated for Halloween and there were skeletons, spiders, pumpkins, and other festive cut outs hanging randomly from the ceiling all down the hall.   I walked through like I was playing the old video game, Frogger, laughing at myself.  The next time I opened those doors, my eyes were quickly scanning for the hanging traps.

The two-year period went fairly smoothly. I just had to learn how to function and navigate visually impaired while learning new curriculum. It was a challenge, but I loved learning new things and testing to see what I did retain.

Life has so many obstacles. Most of them are unexpected and we are unprepared to face them.  Your life may not have turned out the way you envisioned it when you were 18 graduating high school, or even how you envision it 20 years later when you think your life is on track like you wanted and you are sailing through. Don’t give up and feel sorry for yourself if you are faced with a trying hurdle.  Push through and you may see things end up better than what you had planned for yourself.  Sometimes hurdles can be self inflicted. If it is, take a minute, be still, and look at what you are doing to create the hurdle.   In any situation, whether beyond your control or not, your attitude and outlook can make it better or worse.  When the spider hit me in the face because I could not see it, I could have turned around and gone home crying, but instead I kept going forward laughing at myself. Know with God on your side and a positive attitude you can make it through anything. From cancer (times two) to navigating school as a legally blind student, I made it!