Fearless…. Kidney donor

Tonight I felt frightened for the first time as long as I can remember. The day started really nice with a trip to the public market to pick up lots of fresh vegetables and to share a cup of coffee and conversation with my friend John. 

It was a beautiful day– after a long winter it’s pretty exciting when Spring truly arrives and most everyone in Rochester is outside and enjoying the weather. I had planned a long bike ride with my friend Kyle immediately following my trip to the market, so I had loaded up my road bike, my head gear and water bottle and headed to the lake to see my friend. I was excited about going on this ride, it had been almost a year since I had been on the bike. I wondered what kind of experience it would be for me today. In the past I had always shared these bike rides with a man I was in a relationship with and we had enjoyed the ride together talking about life, enjoying the views and we would challenge ourselves physically with speed and distance. Things changed and towards the end of our relationship these rides had become bitter between us and a place to argue and discuss our issues. 

So today was a new day and it felt exhilarating to be on the bike. Kyle and I rode hard along the river, over bridges, up and down hills and the sights were beautiful. We saw a swan sitting on her nest protecting her eggs, a boy scout troop, and many other riders on the path. We rode 20 miles and challenged ourselves with this first ride of the year. When we were done Kyle made a nice salad and we enjoyed some intesting conversation in her home on the lake.photo[1]

Afterwards, I stopped at Wegmans a local grocery store thinking I would stay in for the evening and enjoy a movie and just relax. I was tired and felt fulfilled after a busy productive day. That changed when my friends called and invited me to a fundraiser for the RPD, typically I would say no– but the new me is looking to be more adventures and say yes.  I was dressed and ready to go in 15 minutes.

When I arrived I was happy to see many friends that I had not seen in a long time; however within an hour I was dizzy and ready to collapse. I knew I was in trouble and wasn’t sure if I could move in fear of passing out, let alone drive home. I confided in my friend Shelly who escorted me to the ladies bathroom, she found a paramedic to see if I was OK – my pulse was low, my face was flushed and my skin clammy. I found steadier legs after sitting down in a quiet space for a while and drinking some cool water. I am not sure why this happened, was it the affect of the rigorous bike ride and perhaps I didn’t stay hydrated enough? Or could it be my creatinine levels from my kidney, what I do know is that I have found myself easily tired since the kidney donor surgery.

I felt frightened and alone, I realize it was nothing serious however moments like this can bring out unexpected fears.  For example; I have no family nearby,  who would be called if something serious happened? Would I no longer be able to push myself as hard as I used to?  Can I complete some of the goals I had set out to do this year, such as the 100 mile bike ride and the Tour De Cure ride? 

I know this too will pass. I find myself thinking about what others have to deal with and I feel embarrassed for giving this any power over me.  In the meantime I will continue to ride and build myself back up and definately look to stay hydrated during my workouts!

W.

Perspective and change – kidney donor journey

A couple of nights ago I went out to dinner with friends, it was Saturday and the restaurant was crowded so we sat at the bar and I ordered a glass of red wine before sitting down to dinner.  I was dressed for the night with a beautiful tailored cream colored coat that I was wearing for just the second time. I kept my coat on because of a slight chill from sitting close to the door on this cold evening.  For the past couple of days while being in Pittsburgh things had been slightly off and were not flowing and I was doing my best to give these small inconveniences as little attention as possible; I spent an hour walking through the hospital garage looking for my car and then tried to get to the family home, but the one way entrance was blocked and then finally forgetting my key in the room after everyone had closed up for the night. So it was no surprise as I watched my glass of red wine spill onto my coat.

The red wine was everywhere and my friends gasp in disbelief thinking this would ruin my night.  I kept our conversations going while I methodically rubbed the wine from my coat with soda water. For me this is a small issue when I consider what is important to me in the larger scheme of things such as health, freedom and loved ones.  Loosing my son Kyle at the age of 24 had a big impact on me and I do my best to not loose sight of what is really important. 

Tonight I am back in Rochester and it’s another sleepless night. I miss my son’s and feel so far away from them. With my oldest living in Los Angeles and my youngest son in Tokyo, Japan– its difficult not being part of their lives. I had always wanted to be a Mom and I am so proud of who they are today.  I raised my son’s to be good human beings, to be independent and to know that they are capable to do whatever they want in this world.  It was no surprise when my oldest son decided he wanted to live in a large city, he talked often about living in Europe after college however with the economy he choose LA and built an amazing career for himself with a large vitamin company. I suppose as a Mom we often define ourselves as always being their to advocate, to nurture and love our children and even though the love is always prevalent– life will and does evolve.

For me personally, the past two years of my life have been some of the toughest and I am ready for  new and positive adventures. I have my house on the market, I will have my book completed in the next few months and I will see what unfolds.

As my friends so often hear me say, “life is likes a wave that is continuously moving” and so for me, I just need to go with the flow.

Good night. W

 

Best in human kindness – Kidney donor

This morning we gathered to celebrate living donors at Children’s Hospital of Pittsburgh of UPMC hosted by  Thomas E. Starzl Transplantation at UPMC.

Dr Humar who is Chief, Division of Transplantation Surgery Clinical Director talked about human kindness. I love those words “human kindness”.  I often refer to a letter by Vincent Van Gogh to his brother where he talks about creating art that shows human kindness and what that meant to him. For Van Gogh it was not about doing the popular thing to sell his art it was about being true to himself and painting what his eye saw in people and places.  Dr. Humar talked about the worst and the best in humans today. It comes at a time where so much tragedy and fear has affected our world, however we cannot forget the kindness of humans that will give part of themselves to others.  Whether its the gift of an organ, fighting for our country or the compassion we have for one another.

Dr. Tevar, Tim and I

Dr. Tevar, Tim and I

I was deeply touched today by a women who spoke about her family. When she married her husband 25 years ago he had kidney disease. They have three children together and each one of the children carry the same disease. She donated her kidney to her daughter in college  who otherwise would not survive and she is now looking for a kidney for her son. She desperately wishes she had more to give – for a mother to have to make a choice on which child to give her kidney to is  devastating. Her daughter was at today’s event and you would never know that just a year ago she was fighting for her life– for she looked beautiful and healthy.

A kidney is a second chance at life for many and I hope and pray they will find a kidney for her son along with many others who are waiting.

Tim and I saw Dr. Amit Tevar today! Dr. Tevar was both Tim’s and my surgeon during the kidney transplant and donation.  He is so friendly and kind and we had such a great experience, I thanked him for not just his surgical abilities but for being so genuine, so positive and good with all of us including my Mom the day of Tim’s surgery.

In listening to Dr. Humar open up today’s celebration talking about human kindness ~ I  feel grateful for my experience.

When I hear the stories about the hero’s,  the acts of kindness in Boston that transform us in the worst of times– I continue to believe in human kindness.

Wendy

 

Miracles – kidney living donor program

This morning I checked in at UPMC Starlz Transplant Institute for my six month kidney donor checkup.  Ironically or perhaps not–  my brother Tim also had his monthly appointment for receiving his kidney.  I picked Tim up early this morning both of us feeling pretty good in our journey.  Tim was a bit nervous and hadn’t slept well the night before, he really just wants to be left alone and feel good. Tim has side affects of the medications and worries about possible complications and will need to be watchful in regards to his health. With all of that Tim is so appreciative for where he is and how far he has come. He no longer needs to be on dialysis, his body is getting stronger every day and he is excited about a project he is working on in researching the Veltman family history (my Mom’s side).    

Tim and his daughter Emily.

Tim and his daughter Emily.

As I walked into the Transplant Center it was like visiting an old friend. some of the staff greeted us and asked how we were doing. My six month check up went well, I got the OK to ride my bike 100 miles in May, 2013 for Ride for the Missing and to do the Tour De Cure (ride for Diabetes) in June.

With so much sadness going on in the world– the horrible bombing in Boston and the explosion in Texas~ I see miracles here at UPMC.  This morning I met a young women Amanda who is married with a 7 year old son who had received a kidney from her Aunt just three months ago. Amanda is vibrant and beautiful — you can see the gift of life in her after being on dialysis for 3 years.  We sat in the waiting room and talked about her experience in receiving a kidney along with her pride in her son and her family.  None of of this is easy, Amanda had a large box with her medications on her lap and was taking her 20 plus pills for the morning. I could see the determination and appreciation in her. Her new kidney could last as long as 30 years and we are hoping that a well tested mechanical organ will be in place by the time she is need of  a new one.

After dropping Tim off at his home, I checked into the Family House which is walking distance from UPMC. I immediately ran into a women I knew from my previous stay. Her daughter had received a liver transplant from a family friend and was  recuperating at the time.  She had gone home and was doing well until she got the flu –which turned into more issues. She was eventually air-lifted from Miami to Pittsburgh and after a two month stay in the hospital she is finally doing better.  

As I sit here writing this blog in the library at the family home a woman walks in looking for a book. She stopped to tell me her story about her son, you see this is a safe place where we all feel part of an extended family. Her son had received a double lung transplant, she cried as she told me the story of sitting by her son’s bedside one night at the hospital and listening to his labored breathing and how he would take a breath and then grunt trying to catch his next. As a Mom she felt so sad as she listened to him fight for every breath. She smiled with tears in her eyes it’s been 3 weeks since he has received his new lungs and he is now breathing and recuperating well.

I wondered this morning as I sat in a very busy waiting room at UPMC Starlz Transplant center if the nurses and doctors who tended to us really understood the miracles in the lives of these recipients and the work they do?

Miracles are happening every day! I am grateful for good news.

Wendy

 

Six month check up – Kidney donor

I woke up in the middle of this night with a longing to write. It’s been a while since I have blogged, but yet I write often as I work on my book. My book’s working title is “Courage to Give”.  The book reflects both my experience in donating my kidney as well as others; several of the people that I have interviewed are from my chain.  You see since I was not a match for my brother, I became part of a chain of eight all donating our kidneys and therefore “linking” us together within two weeks last August. With my kidney going to NYC, my brother Tim’s kidney coming from Philadelphia,  etc.

Next week I have my six month check up at UPMC in Pittsburgh and while I am there I am planning on attending a donor reception in hopes of learning more about the process and experiences others have had.me

One thing in talking to other donor’s their is not enough information about what we go through, what to expect and how to take care of ourselves. The brochures and articles I have read from medical institutions say that we will be back to ourselves in just a couple of weeks; however that wasn’t the case for myself and others who have donated our kidneys. One thing we all agree on is that we are grateful for the opportunity to donate on behalf of a loved one. 

I am learning so much about myself through this process and one thing I know for sure is we are all in this together. Our thoughts and secrets only keep us separate from one another, when the reality is we all have our struggles and they are not so unique. Whether it’s financial, worthiness, shame, relationships, or just feeling alone in this world,  I have found that sharing with someone who has earned my trust  releases the weight of my thoughts and brings me closer to others.

Good night. Wendy