Revive Hope

Check out this blog...

I came across a blog called "Merv Sheppard's Transplant Network" and it is definitely worthy of visiting! Merv is from Ontario Canada and has a connection to organ donation, as many of us do. His profile reads:

"Retired after 25 years as a Drug Rep and Continuing Medical Education Associate with Wyeth. I was diagnosed with pulmonary fibrosis in October of 1999 and was in end-stage respiratory failure when I received the "Gift of Life" of a single-lung transplant in April of 2002. I will be forever grateful for my second chance at life and am now an advocate for Organ Donation Awareness and Transplant Research Funding."

I found it a couple days ago so I haven't been able to really dive into his postings, but the few I've read are inspirational as well as informational.  His post today is a moving article about a Canadian doctor who helped hundreds, if not thousands, of patients for many years but eventually needed a life saving transplant.

Check it out, I'm sure you'll agree that Merv's site provides some pretty cool reads!!

Merv Sheppard's Transplant Network

Shingles...

So, a few days after a long bike-ride I notice my shoulder and neck aching again… I had it checked out a few years ago – MRI – the whole works. I have a little stenosis and a little arthritis, which is common among cystic fibrosis patients. I went to physical therapy and they taught me correct posture and gave me exercises that worked. I thought that issue was flaring up again… (I’m not good at following through on those exercises…) Then my arm felt like it had a bad sunburn. I knew I wore my SPF 50 on the ride, so that didn’t make sense – I do my best at staying fish-belly white… Then I started getting other shoulder and back pains – sometimes piercing and sometimes reminding me of the numerous collapsed lungs I’d had – but my spirometries were as good as ever… I was getting ready to call my orthopedic expert (my sister Karen) to get me an appointment to see the doc she works for…

Like all transplant patients, I’m immunosuppressed. We are much more open to infection and cancer and a myriad of problems. So – I commenced to thinking and fantasizing about what’s going wrong. Do I have some whacko infection? Am I dealing with bone cancer or some other form of cancer? Is something happening to her beautiful lungs – to my beautiful lungs?!?!

Then some red blotches broke out down my arm and on my hand… Too many things were happening in the same area and I called my clinic and gave Pat, my awesome coordinator, all of my symptoms… She called back an hour later and said my docs think it may be shingles…

I went in the next day and saw my Penny, the most wonderful nurse practitioner in the world. (Does it show that I’m sucking up to my team?) Penny checked me out and confirmed that it must be shingles… She prescribed an antiviral and a nerve-pain med…

Now I can rejoice in the pain… My freakin’ arm could be on fire and that would be OK, as long as there wasn’t anything wrong with my beautiful lungs – as long as there wasn’t anything wrong with her beautiful gift…

This can be part of transplant… Our lives are saved, and for some of us our new lives are completely amazing… But we’re always facing bumps in the road. Because of the immunosuppression we’re always facing colds and flu bugs and infections and even cancer. And when we catch something it takes much longer to get over it…

And then there is fear – all manner of fantasy about what might be wrong can be going through our tiny minds… So many of us have been desperately ill and wonder what might take away the gift we’ve struggled for, and waited for? What might put an end to the extra chance we’ve been given? What might throw us back into the illness we’ve escaped?

Some of the things come along with transplant are related to childhood diseases that we had. Or childhood illnesses we didn’t have – but our donor had. Sometimes we deal with things like lymphoma (PTLD / Post Transplant Lymphoproliferative Disease) or CMV / cytomegalovirus. We’re more prone to developing cancer, especially skin cancer. And sometimes when we’re diagnosed with something troublesome, we just don’t know what the prognosis will be… Many of the drugs we take in our daily medication cocktail are toxic to our kidneys and liver – and if we’re lucky enough to live a long time with the heart or lungs or liver we receive, we may find ourselves needing a new kidney or liver as well…

I’ve been very lucky. Other people – not so much… Some deal with set-back after set-back and some never pull out of that tailspin. I’ve lost some precious friends this way… Some have a very difficult first year – hitting all of the bumps and having a myriad of problems until they’re cruising smoothly…

And then, sometimes it’s something stupid like shingles where a “normal” person might be struggling for 3-4 weeks with the pain and discomfort, I might be looking at 8-9 weeks… But I’m relieved that I know what it is, and that it’s not the end… Like I said – you could set my freakin’ arm on fire and as long as I know my beautiful lungs are OK – I’ll be OK…

All that being said, I do intend to milk this for all it’s worth… Though I might have come off as a pillar of strength above, I can assure you that there will be a lot of whining and whimpering going on over the next several weeks!!!

Her: “Hun, can you help with the laundry?”
Me: “Oh my God, my shoulder and arm – I can barely lift the quarters to the machine!!!”
Her: “Babe, can you get the dishes?”
Me: “Oh my God, the pain and itching – but would you mind getting me another serving?”

As you might presume, my life will probably not end due to medical reasons…

p.s. If you want to join me, I have my Kari’s Klimbers team signed up for the Sears Tower climb on November 9th… There is also a link to join on my www.ClimbingForKari.org website, and you can read more about it here…

Body Worlds

Currently there is an article on The Charlotte Observer that stuck out to me.  "'Body Worlds' likely to get under people's skins"! After reading the article I found myself quite intrigued by it's contents. 

Steve has mentioned in the past Body Worlds, and at first I found it quite disgusting.  Body Worlds is basically a traveling museum.  A museum unlike any other.  Human cadavers are displayed "in action", showing what a man looks like while jumping, throwing, and just sitting. 

I've browsed through there website and I've found this very interesting. Like I said, originally I was absolutely repulsed.  Believe me, I don't have much of a "strong stomach"  I'm the person who gets grossed out during Grey's Anatomy, yet, after looking through Body Worlds website, I must admit I feel that they are doing something amazing.

One of the most amazing things about this planet is us...human beings.  We are ultimately the most complex organism on this planet.

Body Worlds gives us an insight to how our body works, or doesn't work if we don't take care of ourselves.

Originally I thought this exhibit could persuade potential organ donors to donate their bodies to science, instead of donating their organs to other humans.  And...so what if they did?  In the scheme of things would it hurt organ donation?

I honestly don't think it would hurt our cause.  Here's a couple reason's I think Body Worlds can help our cause:

1.  A smoker could donate their body after they pass away. A young person, who is tempted by the same addiction that killed the person on display sees exactly what smoking can do.  He's shocked and appalled and decides not to smoke. Thus, leaving two healthy lungs if he's an organ donor.

2. A person with diabetes or some other debilitating disease is displayed, showing what the disease does to a person's kidney.  The display mentions that many people with diabetes need transplants to survive, and somehow the seed is planted...to become an organ donor!

And that's just a couple I've thought of!

Body Worlds has the ability to touch a majority of the United States, and world.  Yes, their main goal is not to bring attention to the need for more organ donors, but they have the potential of touching thousands of life's, and indirectly spreading the word about organ donation!

If nothing else, I think this is an awesome way to learn about the human body!!

Reference for Anti-Rejection Drugs

For all of you transplant recipients or parents of transplant recipients - I want to share with you some information on anti-rejection (also called immunosuppressants) drugs I came across in a posting at Jaundice Jill’s Space.

As Jaundice mentions in her posting it can be highly confusing with the number of pills and their varying instructions, dosages, and time tables for taking them following your transplant.

The following are links that Jaundice provided in her post that shows photos of the various medications and possible side effects.

Liver:		http://www.transplant.emory.edu/liver/patient/medications.cfm
Kidney:		http://www.transplant.emory.edu/kidney/patient/medications.cfm
Pancreas:		http://www.transplant.emory.edu/pancreas/patient/medications.cfm
Heart:		http://www.transplant.emory.edu/heart/patient/medications.cfm
Lung:		http://www.transplant.emory.edu/lung/patient/medications.cfm

WARNING!!! If you have questions or concerns about your Anti-Rejection medication do NOT rely on this or any website - consult your transplant team or pharmacy. The link provided above is intended as reference material only!

Jaundice - Thank you for sharing this very helpful information!

Donate Life...Donate Blood

Ever since college, I've always been one to donate my blood.  Over the last couple of years, I've been going in and donating every couple of months.  I'm SO lucky as the company I work for has a blood drive every 8 weeks, so I get to stay on campus and donate during the work day....VERY convenient.

Well, last year, I had a bad experience while donating and haven't donated since.  No worries it was nothing life threatening, it just took me some courage to go donate again.  It was ALL psychological!

Yesterday was my big day...The first time I'd donate in over a year!  I was extremely nervous and got a little panicky while sitting at my desk.  I was honestly contemplating running away! :)  With my orange juice in hand I walked across the street and hoped for the best. 

I walked in the door of the cafeteria and stated my name nervously to one of the nurses.  She handed me the disclaimer and all of those wonderful questions you have to answer prior to the donation.  Honestly, some of those questions crack me up!  Then I was taken back to a cubicle where I was pricked, my temp was checked, and my blood pressure was taken.  I honestly thought I wouldn't be able to donate as I was 100% sure my blood pressure would be sky high for as nervous as I was!

Then I was taken back to a nurse and she helped me climb up on the table.  I told her my fears, and told her I was REALLY nervous.  She was very sweet and told me that she'd make sure this time went a lot easier.  I swear my heart was pumping right out of my chest I was so nervous.  She calmed me down and then the process began. And guess what??

I survived!!!  A little dizzy, but nothing orange juice and chocolate chip cookies can't fix! 

So what happens to your blood after you donate it?  According to GiveLife.org:

Typically, each donated unit of blood - referred to as whole blood - is separated into multiple components, such as red blood cells, plasma, platelets, and cryoprecipatitated AHF (antihemophilic factor). Each component can be transfused to different individuals with different needs. Therefore, each donation can be used to help save as many as three lives.

GiveLife.org is a very neat website that has a lot of information and FAQ's about blood donation. Check it out!!

Sign up with your local Red Cross or Blood Center! It only takes an hour, and you could help someone like Anna Claire  who was born prematurely and could not produce blood on her own. She was in need of blood immediately or she would die.  Thankfully blood was available and Anna Claire survived.  Your blood could also help a mother during childbirth, a woman receive a heart, a 16 year old kid who was in a car accident, or a father with leukemia.

So stop sitting here and reading this blog post...go sign up to donate blood!!!

Heartland: Episode 1

Did you catch the premier of Heartland last night? If so, here is your chance to provide feedback on your thoughts of the new show.

My thoughts….

I highly enjoyed it! The characters showed so much compassion for their work, the recipients, and the donors. This mirrors my personal experience as my transplant surgeon and transplant team are very passionate, caring, and kind people.

I believe the show did a good job of introducing some important facts in the script of the show. For example, at the very beginning when Kate was speaking with the mother of a teenage boy about organ donation, the mother asked “Will you pay for the funeral?” Kate responded, “That’s not how it works?” Speaking of this scene, what are your thoughts about the dialog between the Kate, the organ-recovery coordinator, and the mother?

How about the character of the husband who consented to his wife being an organ donor? How he was in such grief and seeking comfort in knowing that something good came out of his wife’s death.

Do you have any concerns about any wrong perceptions of organ donation being left with the viewers? If so, what are they?

Share your thoughts with us!

Sick girl speaks...

I have Google Alerts set up for “lung transplant”, “cystic fibrosis”, and “Steve Ferkau” (yes, vanity is alive…) From time to time I stumble across news articles or blog postings that strike a chord (or sometimes strike a nerve!) I’ve stumbled across things that struck a few chords in this special woman’s blog.

Her name is Tiffany and, like me, she has cystic fibrosis and has received beautiful new lungs. Actually, she has received them twice. She describes herself as a “professional patient” and I’ve seen some pretty neat perspectives in her postings.

She gave a talk to medical students – the topic was Healing vs Curing Her entire talk is worthwhile reading – here are a few excerpts I particularly liked:

There is a difference between healing and curing. I found out that healing was my job and medicating was your job.

Curing is when the body has rid itself of illness and disease. It is a physical state of wellness. Curing is modern medicine’s responsibility and can be done with or without the assistance of the patient.

Healing can be done no matter what the outcome of the illness- healing is achieved from within and may still have a result of physical death. Healing is an emotional/spiritual state of wellness. This is the patient’s responsibility and can be done with or without assistance from doctors, nurses etc.

It became my job to strengthen myself from within, despite the pain I was enduring. Happiness comes from within, suffering comes from within.

I think there is a great deal of insight in this idea that so many can benefit from on both sides of the hospital bed. And, I like her take on success, failure, and positive mental attitudes toward the end of her talk:

Finally, I can not go without mentioning, as this is very close to my heart, the dangers of confusing healing with curing and therefore judging a patient’s dedication to getting well by the physical results. In some of our “power of positive thinking” perspectives, there is a tendency to put responsibility on a patient for their success or failure, success being living and death being failure. I can assure you; this is a responsibility too awesome to bear.

Death is not a failure and it is most often not a choice. I have known many that have died before me that were not in any way lacking a positive attitude or a will to fight. I could never call myself a survivor because that would make them a failure. They were anything but.

If it were not for my second transplant, I would have died. In the same way, my spirit was so strong, I could never call myself a failure and would have been crushed if someone had. Please be careful when you make assumptions about who is “working hard” and who is not. Appearances are not always what they seem.

The first experience I had reading “sick girl speaks” was a truly moving letter to her transplant coordinator, Vicky. After deciding there was no point in pursuing a second transplant, Vicky apparently changed Tiffany’s mind and helped her get more time, let her find love, and look forward to another tomorrow.

It’s a beautiful letter that details an incredible journey. My favorite paragraph is at the end:

Vicky, all that I am able to offer you is the hope and prayer that God will see all that you have done and reward you beyond all expectation. May you be blessed a thousand fold in this life and any that follow. May all the good you have done be done to you. May all the compassion you have shown be given to you when you need it most. My passionate prayer is that your own joy will be proportional to the love you have given so many patients. I offer this prayer with sincerity and humility.

But you really need to find out how it got to that paragraph…

Tiffany's blog is at http://sickgirlspeaks.blogspot.com/

Waiting for the Call

What began as a cold for the young father of three, Peter Williams, in April 2002, left him fighting for his life on an artificial heart machine. Peter was diagnosed with Dilated Cardiomyopathy; enlarged heart. On March 14th, 2005, Peter was officially placed on the heart transplant list.

In October, 2005, Peter’s wife Misdee launched the blog “Waiting for the Call”. The blog is the story of their family’s continuous journey on the heart transplant list.

Misdee says in one of her postings, “All stories must have a beginning, middle and an end…..There will be tears, laughter, sorrow and happiness.”

She couldn’t be more correct! As I read through the current posting and then started to jump around in the past postings, I found myself with swelling eyes, then laughing, and often smiling. Misdee does an amazing job of sharing her family’s journey through the ups and downs!

Peter is still waiting for his new heart and desperately needs it.

“It’s very hard. Each night you pray ‘Please let there be a heart’. Then you think, ‘My God, I want someone to die’. I don’t really, but I don’t want Peter to die either. His little girls need their dad,” says Misdee.

I encourage you to visit “Waiting for the Call”.

God Bless Peter, Misdee, and their three daughters!

TransplantBuddies.org

Several years ago I met a special lady named Risa. Risa was in Chicago from Florida – she had received a double lung transplant in at Loyola in 1996 and was experiencing rejection – she was here for a few different treatments in an effort to stop or reverse her rejection. One of our very special nurse coordinators knew Risa could use a friend and some motivation and called me to see if I was willing to chat with Risa… That nurse knows I’m always willing to chat with someone who needs a boost!

I know she was going through some scary stuff - stuff that I fear myself...  Yet, Risa seemed so positive about life and all she was dealing with.

While she was in Chicago, we had phone conversations and exchanged letters and emails, but we never actually met – though I had intended to meet, both of our schedules were a little crazy… I’ll meet her someday.

Risa is an amazing person – after her first transplant she spent a lot of time helping others and speaking publicly about transplant and organ donation… She told me that some friends told her how helpful she was and how good she was at helping, and they felt she should organize something. Risa saw a need for an interactive resource for transplant patients and started TransplantBuddies in 1999.  While we she was in Chicago, she invited me to join – I joined few months later.  My username on TransplantBuddies is BreathinSteven.

TransplantBuddies is a web-based “support group”.  Registration is free and pretty much anyone is invited, but it is intended to support transplant recipients, people waiting for transplant, living donors and donor families, as well as friends and family of any of these folks.  There are several organ specific forums, as well as forums for prayer/inspiration, nutrition/fitness, laughter/small-talk, donor families, and a Spanish speaking forum.

It’s a pretty large community, with hundreds of members – mostly from the U.S., but some from all over the world! And most important: there always seems to be someone willing to answer a question, give some guidance, or lend a sympathetic and compassionate ear (or typing fingers). When a new member posts a question, or a member returns after a long hiatus, Risa is usually the first one to welcome them, or welcome them back.

TransplantBuddies maintains libraries of transplant information, drug information, UNOS news, and a variety of topics. They maintain hundreds of links regarding all organs, financial and drug assistance, various transplant centers, youth links and general transplant information links. There are also bios and photos and “life stories” of many of their members.

There are a number of very knowledgeable contributors.  Transplant patients who are very educated about certain organs, knowledgeable about various medical procedures, drugs, the immune system, UNOS and OPO policy, organ procurement and allocation, and many other topics.  Like so many groups, live or web-based, the information is always couched in the fact that it is not given by physicians or medical professionals – that we are patients, friends and family and nothing should supersede, or take the place of advice given by a physician.

A number of donor family members occasionally post – I think so many of the recipients love seeing them there – so many never experience contact with their own donor families and seeing them, and having contact with them reminds us a little more of the gifts we’ve been given, or gifts we’re waiting for – it reminds us that there are very special people and families behind those gifts.

Risa’s rejection eventually took its toll, but she received two more beautiful lungs in 2005 and after a pretty rough recovery, she’s doing very well.  Her husband took over posting some information for and about her while she was down for the count – and like so many people we follow through this adventure, we followed and worried about and supported Risa.

She’s back as good as she ever was.     www.TransplantBuddies.org

Tolerance Induction

As a kidney transplant patient, I can only imagine an anti-rejection medication free life? But are doctors at Stanford University Medical Center on to something with a protocol they are developing called "tolerance induction"? Tolerance induction in simple terms tricks the transplanted kidney into thinking it's in the same body. How? By harvesting blood cells from the donor and giving them to the recipient in addition to the kidney with hopes that the recipient's body will accept and continue making the new cells that recognize the kidney.

Two years and two months agon Larry Kowalski received a kidney transplant and has been medication-free. Interested in reading more about Larry? Wait no longer!