Giving for Gwendolyn

For: Gwendolyn & Robert Westlund
Organizer: Pamela Rocco & Friends
of $30,000 goal.
Raised by 136 donors
51% Complete
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The Story

Gwendolyn is a 32 year old loving wife and devoted friend from Willowbrook, IL who desperately needs a heart transplant, and your help.  Her journey thus far has been incredibly difficult, and one health concern after another has plagued her since she was in her mid teens. 

In 2002, at the age of 21, Gwendolyn was diagnosed with Hodgkin’s Lymphoma, a type of lymphatic cancer that affects the lymphatic and immune system.  She was treated with surgery and radiation therapy, but unfortunately her “cure” would end up causing nearly as much long-term damage as it did short-term good. 

Gwendolyn’s cancer was successfully subdued and she entered remission in late 2003, thinking that her battle had been won.  Unfortunately she would spend the next 5 years dealing with a variety of health problems from chronic bronchitis, kidney stones, hiatal hernia, ulcers, infections, etc.  Tragically, in 2008, after a long history of health problems, Gwendolyn came down with double lung pneumonia.  After nearly two weeks of hospitalization and antibiotics, she was diagnosed with heart failure due to a prolapsed mitral valve caused by scarring from her previous radiation treatments.  During a diagnostic test, Gwendolyn reacted poorly to the anesthesia, and during the procedure her heart stopped unexpectedly & was dead for near 2 minutes.  She was successfully revived, and from that point forward kept her health in control with a healthy diet, cardiology checkups, and medication.  Gwendolyn showed improvement from 2011-2012, and once again thought that she’d beat the odds.

In May 2013 while at work, Gwendolyn suddenly fell ill and knew immediately that it was her heart.  She was taken to the ER at Good Samaritan Hospital, and after a week of tests and second opinions, she was transported to Christ Hospital in Oak Lawn to receive specialized care for advanced end stage heart failure.  Within 24 hours, a Left Ventricle Assist Device (LVAD) was implanted, the following 2 days they needed an aortic and mitral valve replacement to combat her cardiac failure.  The device caused problems with the right side of her heart and an external Right Ventricle Assist Device (RVAD) was implanted for the majority of her stay.  She endured four separate heart surgeries, was under sedation for 8 days, and remained hospitalized for over 2.5 months.  Gwendolyn is now on the national registry for a heart transplant and hopes to get “the call” at any moment. 

Gwendolyn has been a responsible & caring member of society for her entire adult life. She’s worked throughout most of her ailments and provided for herself & her two younger siblings as if they were her own children, being their surrogate parent for over a decade.  Before her heart failure, Gwendolyn was a dedicated volunteer to many organizations.  She participated and volunteered for causes that she believes in and has been active with cancer research fundraisers, Look Good Feel Better, Toys For Tots, World Vision and has even helped organize fundraisers for neighbors in need.  She’s always the first to jump in, the first to say “yes,” and the first to rally a team for whatever cause she’s involved with. 

Before falling ill for the third time, Gwendolyn was blessed to be able to marry her biggest supporter, her caregiver, and love of her life, Bob, in October 2012. With all that Gwendolyn has been through, the last thing that she and Bob should be worried about now is how to pay the bills.  Between May 2013 & October 2013, Gwendolyn’s portion of medical bills, prescription costs, insurance premiums, and co-payments, deductible & co-insurance have added up to over $150,000 and the couple is drowning in medical debt.  When “the call” finally comes, the costs of her heart transplant and related hospitalization, home care, & recovery will further add to what feels like an insurmountable debt. The average cost of a heart transplant surgery, pre & post op testing, & recovery ranges between $750,000 - $1,000,000 and depending on your insurance a good majority of that expense is the patients responsibilty. 

As friends of Gwendolyn and Bob, we’ve started this campaign to try to play a small part in helping to alleviate their financial stress.  We want them to be focused on Gwendolyn’s health & recovery, and not on unrelenting creditor calls and a flood of medical bills. 

If you’re able to help with a donation of any amount, please click the “give now” link on this page.  If you cannot donate online, please feel free to send a check, money order, or even a few dollars to the address listed below and reference “Giving for Gwendolyn.” Even $1 helps and is appreciated.

Gwendolyn Westlund
11s514 Rachael Court
Willowbrook, IL 60527

If you have any questions, or would like to support Gwendolyn with a non-monetary gift, please feel free to contact me via email at [email protected].  

If you are unable to donate but still want to help, please share this campaign and help us spread the word. 

Thank you and God Bless!

Special Thanks to Rob Baker at Photogenic Chicago for the stunning "before" pictures he took of Bob & Gwen at their wedding in October 2012.

Fundraiser Updates

Posted on June 30, 2015

Posted on June 30, 2015

Update post 6/29/15 by Gwendolyn Westlund

Well, I'm feeling extra run down lately. It seems my bi pap mask only fits well the first week and then, despite proper care, if I move in the slightest it starts leaking horribly and wakes me up anyway. I'm not sleeping and when I do, I am not sleeping well. My joints are extra achy and my migraines and constant sneezing have suddenly returned.

I mentioned in my last post that I talked to my transplant psychologist about this and panic attacks. The team was supposed to get back to me about changing some meds, but I still haven't heard anything. I'll call again tomorrow, but it's relly frustrating when I'm trying to focus and I'm constantly needing to chase after my doctor's and team about test results and med changes.

You have to advocate for yourself. It's exhausting but you do. It's disheartening too, because I love my team and realize they are busy, but every patient matters, especially when you get phone calls constantly about the money you owe them and they you can't even get a phone call to check in.

I think my doctor appointments will need to be pushed back again. Next week is not panning out with rides the way I anticipated. Hopefully I can still get in this month. I assume my biopsy is at the end of July, no one has confirmed either way, but when I know, I will update with that and any news of doctor appointments.

The Relay for Life Westmont & Downers Grove were both successful and I am honored to have been the survivor speaker, but I think I over do it sometimes. Unfortunately I don't know until I've already overdone. Not the worst thing in the world to run myself down trying to do good things and I won't stop. I realize that's my choice but I can't in good conscious be in this world without paying it forward to my donor and family and God. Sorry if you don't like that, but that's why I am here.

Rant over, sorry all. Not my usual sunshine self today. Tomorrow will be better. I see the babies, that always puts a smile on my face. I'll also be finalizing plans for Recycled Life: Paying it Forward blood drive/organ donor event in August. Need to get my gusto going for that, it'll be a long weekend & I'll need my energy.

Sorry for being down, I usually try to keep myself positive. Not everything is sunshine or roses and there are not so fun side effects to meds and transplant. I need to get into rehab again too but like most things it's nearly impossible with no rides. Working on it, working on it for all tx patients. Things will get better and I will change it myself somehow. Be well, God Bless, and I'll update in the coming weeks. I'm ok, just a little blues.

Posted on April 29, 2015

Posted on April 29, 2015

Updated post 4/29/2015 by Gwendolyn Westlund

Well, I've neglected updates for a couple months. Things have been busy and frankly I've been tired inbetween project. In February I went on my first trip out of the country and saw the ocean for the first time! It was an amazing experience and I'm so very blessed to have my father in law, Bob and his wife, Sandy to spoil us a bit. He knew this was on my bucket list and decided to treat us as our Christmas/Birthday gifts!!! I did a dolphin encounter & zip lined for a short jaunt across the ship, we also saw some fantastic shows & had some great meals. Thank you seems so small of a phrase, but Thank you.

Unfortunately I did have another set back Mid March. I had kidney stones again and with out symptoms it managed to spread an infection from UTI, bladder, kidney, and blood infection. I was hospitalized for 9 days and had a variety of antibiotics and antiviral medication. I needed to have a stent placed to remove all infection from my kidney. I was then sent home with a pic line and IV meds for another 10 days & oral antibiotics for 7days. It was a long ordeal, especially with my first event at the end of the month, but I managed.

I was proud to have the Mayor of Westmont sign and present a proclamation for the town to adopt National Donate Life Month. I successfully hosted my first Recycled Life event at the end of March to bring awareness to organ & tissue donation, blood donation, and also bone marrow matching the Westmont HS and help with various Westmont Entities. Co-Hosted by Westmont HS and Shane Johnson with The Sweet and Savory spot in DT Westmont. It was a success for a first event with over 100 people in attendance and 51 blood drive appointments.

In April I helped raised funds for the Walk the Walk in Hinsdale on behalf of my new friends the Tomanovich Family. Attended a couple of donate life, life goes on, and gift of hope sponsored awareness events. With some help from my heart transplant friends from Advocate Christ Medical Center, I was able to gather donations for Easter gifts and my heart sissy Nicole Brown and I delivered at Advocate Christ Children's Hospital. It was another great experience and we were proud to be able to deliver on behalf of our transplant support group and our wonderful guide, Transplant Psychologist Dr. Ed Mahoney.

I was also lucky to attend fundraiser for Noah Tomanovich's Walk the Walk for Autism Campaign, which was hosted by Cindy Lopez and Signature Events. I attended one of many wonderful events put on by Life Goes On with Secretary of State Jesse White! I was interviewed by WCIU You and Me This Morning live on April 23rd and it went pretty well! Bobby and I walked the walk and my biopsy, which was postponed due to the kidney stones and infection, finally took place yesterday. Everything looked good and we anticipate zero rejection.

Looking forward, I'm trying to get back into Cardiac Rehab, order a new face mask for my sleep apnea machine, and resolve my thyroid issues. I also need to get another c-clast infusion for my calcium and it's about time for all my annual  cancer screenings, but this is all life and maintenance. The most exciting things to come is the future of Recycled Life, the tv spot I did generated a large amount of help starting my non-profit. I am also looking forward to my Recycled Life Relay Team in the upcoming Relay for Life for the American Cancer Society in Westmont at Ty Warner Park. I will also be speaking at the opening ceremony. I say will be, but I should say PLANNING ON. God has his own plan for me and changes course when needed, even if it's a set back like infection or fatigue, not sleeping. I have to look at it as part of the plan.

I hope to inspire other's to reach out and lend a helping hand, to tell their stories of survival & thriving with new life, and support the many people in the area who need help obtaining resources, finding counseling, and hopefully financial assistance. Please pray for my mission and also my health. Thank you all.

Posted on January 16, 2015

Posted on January 16, 2015

Update posted 1/16/2015 by Gwendolyn Westlund

Well, it’s been about a month since my last update and as usual it’s taken longer than I imagined. I spent the end of the year trying to fit in every appointment I could and still, didn’t get all of them done. I feel like no matter what I do sometimes, everything gets dragged out for one reason or another.

The coolest news is that I’m starting to do some awareness events!!! I’m using the page to gain support for organ donation education and awareness, help friends, and support foster care initiatives. I’m currently working on something fun, progressive, and educational in the community and if all goes well will be able to tell people more by the end of the month.

My hematology appointment just left me with more questions than answers. While I’m glad no bone marrow testing needs to be done, the new thing is the genetic testing for breast and ovarian cancer. Unfortunately it’s somewhere around 10,000 dollars and insurance will only cover it if Gram has the carrier DNA.She has to get tested first, since she had that kind of cancer.Not the end of the world, just 3 more steps to getting one thing done.

The OB/GYN was roughly the same. Though all my tests came back negative, which is awesome, I’m still dealing with the Nexplanon implant and getting approval for another option. This constant period is way not cool! I guess the Depo shot is the only thing that would give worse side effects. I’m trying to get clearance from the team and infectious disease to get the Mirena instead.

I managed to get my second sleep apnea study done and the order for my machine & prescription for pressures went in before the end of the year, but the appointment to set up everything was finally just set today. Someone will be coming next Wednesday in the morning, over a month after the order was made. I wouldn’t be so anxious if it were just for the exhaustion & fatigue, it’s also because my oxygen levels get too low when I’m sleeping and it’s potentially damaging my new heart and other organs. Even if this doesn’t solve my sleep and fatigue issues, the apnea machine has to be used & the sooner the better.

The Urologist went fine, but they can’t exactly pin point the cause of my kidney stones, it may be a need for more citric acid, they’re giving me a pill form to try or it may be my medications. We’ll do another analysis in a few months.

Just seems like with this whole thing it's an extra 3 steps for everything and nothing gets done until you make two more appointments. I've had Doctors and Nurses say, it's a full time job just being sick or recovering! Yes it is!!! It's exhausting. The calls, the emails, the scheduling, the double checking with schedulers and insurance, and billing departments and getting the round around three times before you get answer on any one thing. Add nervous breakdown to the list? No...I will not!

Biopsy at the end of Decemeber was Negative!!! Awesomeness! They took my predisone down to 2.5mg daily, but my prograf levels went up so I don't know that my body is feeling any different. I'm still getting fog brain and this disconnected feeling, I still have tremors and migraines -  though not as bad, and the random nerve spasm. Don't get me wrong I'm so grateful to be here and I'm getting a little better everyday, I'm just ready to be BETTER! To be me, to take on more. My body doesn't love that idea quite yet.

Infectious disease gave me clearance for the trip in February so that’s exciting!!! I’ve got all my shots taken care of and just need to go in one more time for a final check up before the trip and then check in when we get back. I just need to be cautious while I’m there too. Masks, sanitizer, water shoes, spf, sun hats, the works.

I’m so nervous and excited at the same time! I’ve never seen anything really, well that’s not true. I’ve been to Vegas once to celebrate my remission, a week at Disney World courtesy of my amazing father-in-law, weekends in Wisconsin with Bobby, and Arizona several times to visit family. This will be my official full length vacation with relaxation, shows, dancing, music, dinners, activities, and the ocean!!! I’m going to see the ocean!!! My father-in-law is awesome! You get a new heart, you survive, and you get a cruise for your birthday, Christmas, heart anniversary present. Check it off the bucket list. The first time in my life I need a passport. I’m super nervous though about all the medical stuff, just trying to be as prepared as possible! Extra meds, a list of hospitals, the emergency insurance in case we have to get me back to land, we should be good.

Between that and all the awesome things I’m working on for organ donation awareness and registration and blood drives, the foster care initiatives and care kits I’m trying to get people to sponsor for the kids in foster care…2015 is already off to a pretty amazing start! Can’t wait to see what great things unfold as I continue to follow my path! All I can really ask for is better health and more strength & energy as the year goes on. Please continue to pray for me and us for good health, safe travels, & continued support for our medical needs and helping others!

Next biopsy isn't until end of March, but I will update again soon! Still monthly blood draws and one or two doctors. Plus I'll have to report on the pay it forward projects!

God Bless & Be Well.


Posted on December 18, 2014

Posted on December 18, 2014

Update posted 12/18/14 by Gwendolyn Westlund

I've been informed by a great many people that they'd like to know my story from the beginning; I didn’t realize I hadn’t been detailed in my cancer and history leading to the CHF and really thought it would sound like complaining. My apologies this is overdue, I've been working on it for three weeks. It's a lot to remember and I had to ask some people to fact check. That said; let's start at the very beginning, a very good place to start. 

I had always had some kind of issues with my health. In Jr. High and high school it was always something, my weight would yo yo with no change in diet, I would be extremely fatigued, have stomach problems, migraines, etc. Into my Jr. year of high school, I would develop more extreme swings in weight, sleep patterns, and dizzy spells. This would go back and forth for years, increasing as I went from a senior in high school into my very early twenties. While I begged my physicians to figure out what was wrong with me, & insisted on testing, I went through blood tests, scans, MRI's, upper & lower GI imaging, with no answers. 

Things were getting worse, I was too weak to drive my car and was experiencing black outs in vision, thus losing days at work increasingly. Unfortunately the high-end department store I worked for a "top 100 to work for" was less than understanding and my department manager actually said I needed to figure it out or suck it up, because with no diagnosis, it was my health or my job. This was heart wrenching, I had the job I wanted and I was good at it. I was a counter manager at one of the leading high end department stores in America, with brands I wanted to work with & was good at selling. I was the youngest counter manager they'd ever had and I earned it. I always had a doctor's note, but not an official diagnosis and this would be my downfall? NOOOO! I needed someone to figure out what the heck was wrong and fix it fast!!!

Meanwhile the Doctor's labeled it as depression, aggravated by hypochondria & a mild chronic fatigue syndrome, but that was an unofficial diagnosis with no treatment available. They recommended Zoloft. I told them I wasn't depressed, at least not before they kept blowing me off & calling me a hypochondriac. I'm begging, someone to help me! Take a tissue sample, anything to rule out cancers, nerve disorders, something hard to find?!? Help because I know my body and something is wrong! But, yep, I sure as hell was depressed now. *Sigh*

Well, one day at work had a bit of a black out with my vision again, felt a migraine coming and was rubbing my neck and base of my head and at the bottom of my neck, I felt a bump. A very large, round mass sticking out the side of my neck, almost like I'd swallowed a golf ball. I ran to the next cosmetic counter and asked one of the older women, someone I knew to be a mom and grandma, if it was a swollen gland. She said not like any she'd ever seen & I had suspected that'd be her answer. I saw the doctor the next day and they actually said to me "it may be a swollen gland, let's wait a few weeks to biopsy, it may subside."  

A side note looking back - I cannot believe the amount of crap I let employers and doctors get away with in the stupidity of my youth! I want to punch a 20 year old me in the face. Please for anybody reading this, make sure you educate yourselves and your children on their rights as employees and patients! We all need to realize that doctors are really educated, highly paid, employees. Our employees, they are contracted per service per client and can fired, just like anyone else. If they aren't doing their job correctly it could very easily cost us our lives! Be careful, be educated, and speak up. 20 year old me, Ugh! Apologies for the side track.

Back to the “swollen gland”, the next day was a huge event for the cosmetics department and we were booked with appointments! Things were buzzing and everyone running around, makeovers galore! I was 20 going on 21 and the youngest counter manager this store had ever had. I was not going to quit! My body decided to defy me. I blacked out and went down in the stock room; my neck had swollen twice its normal size on the left side - where the lump was. I was taken to the ER and the doctor there said he didn't want to panic me, but he thought it may be a lymphoma. I said "THANK GOD", he looked at me paralyzed by shock and I said "it's just nice to finally hear someone say it's something other than in my head, I figured it was cancer." They scheduled the biopsy for the next day. 

I finally had a diagnosis; stage 2 Hodgkin's Lymphoma at the age of 20, and started treatment one day before my 21st birthday! Work was less than pleased, I called to make them aware that we had finally found the issue & it was malignant. I went in a couple days later to fill out short term disability paper work and was told my position had been closed & therefore I had been terminated, not fired, terminated due to lack of work. I was three weeks shy of a year, making me ineligible for FMLA. My managers did not come out of their office. No one sent a card or message, nothing. It was quite sad and pathetic actually.

Well, speaking to lawyers later in life, I realize I should have sued and probably wouldn't have such a continued financial burden, but that wasn't the case then, I was given bad advice by a relative I trusted & considered my counsel. However, I was lucky enough to have said counsel make a phone call on my behalf and get my position reinstated long enough to get my Cobra and disability benefits enforced, which I'd paid for so I was grateful enough for that.

The oncologist told me I was very blessed that Hodgkin's Lymphoma is a highly curable cancer and a slow moving one. To be a stage 2, it must have been there for some time already! Hmmm...Like since high school? 

However, since it was a stage 2 and it had gone unnoticed in scans and blood work until the tumor showed itself, and being that the lymphatic system runs throughout the body, I was advised to do one heavy round 5 days a week for eight weeks from above my ears to my rib cage and a second round 5 days a week for 6 weeks from below my ribs to below my pelvis. I fought it at first with a concern for having children later and was told very bluntly that a dead woman couldn't have babies. Pretty harsh for a young woman who'd day dreamed about what her 3 or 4 children would look like, with her husband & their "normal" family, their small but warm home in suburbia, & of course the family dog. A fantasy she'd had since she was 11, as most girls do. What can I say I was 21, I also thought by some miracle, my father set aside money for my wedding or college and I was supposed to be married by 23 and a baby on the way by 26! Oh to be young and naive. 

Anyway, I had always been sensitive to sun, medications, even a sip or two of alcohol. That said the side effects of radiation treatments were described as very minimal and nearly never occurred. The first day I experienced extreme and violent vomiting which would continue on a regular basis. Anemia, constant colds, flu, sinusitis, migraines, chills, cold sweats, loss of appetite, body aches, hair loss, and radiation burns which led to charred black cracking skin on my neck, chest, & underarms. The radiation burns, were apparently accelerated by my lotion and deodorant, which it said somewhere in the 20 some odd page booklet they gave me in fine print. It didn’t occur to someone to say anything while they were complimenting me on how I was the prettiest little cancer patient they'd had and how great I smelled all the time. What's wrong with people? The burns and scarring I would find would come to haunt me in other ways.

I went from my heaviest @ 165-170lbs on a 5'2" petite frame to 97lbs - a weight I don't recall being beyond the age of 10 years old. I was buying clothes at the Gap Kids, which I have to say I thought was pretty freaking sweet, considering my previous low had been about 130lb. Finally I was the skinny hot chick, and all I had to do was almost die...okay, well that part sucked, but I try to look at the glass half full. But then there were the burn scars, thank God when I went back to work two years later I found a dear friend and a man I would later work with for 5 years and later on and off throughout my career. He gave me a product the company I ended up working for made and said the main ingredient is what they keep organs in prior to transplant because it has such great oxygenating properties, it revitalizes and restores and detoxifies. I checked with my doctor at the time and he said that was correct. I don't know if that's they case anymore but it worked! That and some mild exfoliation treatments and it completely resurfaced my top layer of skin at least to the naked eye. You can still see the scar tissue when I do any kind of self tanner - as it fades I look like a spotted leopard because it still grabs the scar tissue. Anyway, two things that would later come back into play, future scars and organ transplant, kind of freaky now that I'm writing it out. I stayed thin for a long time and had a lot of issues with constantly catching colds, flu, pneumonia, infections, etc. & I would be hospitalized periodically.

In March 2008, after an original diagnosis of sinus infection, I drove myself to the emergency room and I was admitted with double lung pneumonia, my body wasn’t able to get rid of it. I felt like an elephant was sitting on my chest. I had complained that I felt heavy and very fatigued to my doctors and they said it may be chronic fatigue syndrome something to that affect. After two weeks of oxygen, swelling, IV antibiotics, and a losing battle with pneumonia, they finally came to the realization that I had Congestive heart failure and a prolapsed mytro valve brought on by scarring from radiation therapy. My ejection fraction was 30%. The angiogram didn’t show blockage, however my body did not like the anesthetic and I coded. I was dead for about a minute and a half, you’ll come to learn that I use a three minute rule now. I didn’t know what happened and when I woke, I told the nurse I felt like they drop kicked me! They couldn’t tell me what happened until my doctor was there. From then on I warned anyone performing a procedure that I was nearly allergic to anesthesia and narcotics due to the severe reaction my body has to them. Doctor’s tend to think they know more than you and these little warnings are “cute” unless diagnosed by another physician as an actual allergy, so make sure you’re taken seriously.

I spent the next five years working with a wonderful cardiologist, changed my diet, took my cardiac medication and was very compliant because it all kept my heart in check, despite the drop in my blood pressure, dizzy spells & fainting. These side effects though worth it in the long run, would not do me any favors with future employment. I would be hospitalized with heart failure at least once a year, usually overnight or a couple days for a “tune up”. They’d get fluid off of me and get my blood pressure stable and send me back out. My ejection fraction at one point got as low as 25% and I was told if it reached 20% they would have to put me on a valve transplant list. I let them change my meds, worked out, really stream lined the diet, quit any remaining bad habits and managed to get my EF back up to 40% in 2012 and a goal of 60% by 2014 1year after my wedding so we could attempt a family. What’s the saying? “Life is what happens while you’re busy making other plans.” Couldn’t be more true.

So September 2012, finally a great job with potential and good people. October 12, 2012, I marry my soul mate. Literally one of my best friends, my geekmo, my catspajammas, & the love of my life. Things are finally looking up. February 2013, it gets better! The office manager is moving out of state and leaving on great terms and will train me as the new manager! A raise, a great title, a job with even more potential and I love it. I love the bosses, I love my job, I’m happy with the money, I work extra hours because I truly want to do a great job! What’s that other saying? “If it seems too good to be true, it probably is.”

May 9, 2013: I say to my company’s VP very calmly “don’t panic, I’m okay, I just need someone to drive me to the ER for a tune up, worst case scenario I’ll be back tomorrow.” Famous last words! My first time back was yesterday, December 17, 2014 to volunteer for a holiday party the company puts on every year for the Off The Street Club in Chicago. One of the things I love about them.

This brings us through the various cardiovascular surgeries, LVAD, the coma, the lengthy stay in the hospital, a couple more near death experiences, and eventually the heart transplant and the escapades that ensue from that point on.

Lots of doctors appointments and a biopsy before the end of the year and I still need to do a quick cost of care recap. So look for another update or two coming very soon.

As always thank you to all of our loved ones and supporters!

Be well & God Bless.

Gwendolyn W.

Posted on November 9, 2014

Posted on November 9, 2014

Update 11/8/2014 by Gwendolyn Westlund & Friends

Well it seems the kidney stone fiasco pushed things further back than I had originally thought. Past my anniversary date, so that it's no longer under my year of care umbrella, so we start again.

I did have a follow up with the Urologist, in which I waited in an empty exam room for 58 minutes for my Dr to finally come in and tell me he has nothing new to tell me and needs me to do more tests and come in again in 4-6 weeks. I know it was 58 minutes because I was putting my coat on with the grand intention of walking into the waiting room, to the reception desk and letting them know that this kind of behavior is not acceptable and that I'd have to let them go and find someone else to fill the position. Not only do you show up late with no apology or excuse, but then you didn't complete your assignment - I know I'd be fired...just saying.

I managed to see Infectious disease and get my all clear and my flu shot, but still need all the Hep shots, and a variety of other vaccines, that's pushed to next week.

Hematology has decided that I do not need the bone marrow test - Yay!
However, I do need my gram to get the Breast Cancer/ Ovarian Cancer blood test done and if she's positive then I have to have it done. If she can't get it done then we have to find a work around because it costs like 10K if you don't have a cause for the test. Can't schedule until I hear from Gram either way. Pray for negative results. Good grief Charlie Brown!

Still need to see Respiratory Dr for follow up late next week, OB/GYN - late November.

Had a great 1 year check up with one of the transplant team cardiiologists, Dr. P. He is one the kindest most empathetic doctors I've met with my team, Dr. M is pretty kind as well, but rushed. This appointment was great, because while he didn't have answers for everything, he took the time to listen to the issues and explain why I'm having certain problems and reassure me that now that we've cleared certain things with specialists it's more likely the medications reaking havic on my body. I am as usual the 1%, but I'm here & grateful, some days are just easier than others.

Each med needs another med to cancel the side affects & each med you add costs more money. Each specialist, each copay, that adds to stress and depression & another pill and doctor! YIKES. That reminds me, meeting with the Finance department again at the hospital, dear lord please help me resolve this.

Other than that, celebrated my hubby's birthday this week, had a nice day out and as usual one day out equals one day used to be two hours out would equal one day in, so it is slowly getting better. I try to do a couple hours at a time, so I'm not wrecked for to long.

As always thanks to God for letting me be here to celebrate with Bobby, to see Evie learn to roll over and eat whole foods, to see my mom light up at the smallest little kindness or gift. Thank you for all the blessings and the beautiful people and friends in our lives & thank you anonymous donor for saving my life so I can be here with them and find my mission.

Pay it forward everyday, in any small way you can. Adopt, a pet, an orphan, etc., Donate blood, organs, tissue, money, a pair of shoes or gloves, etc. Buy a meal for a needy stranger, buy a coffee for a homeless person, something, anything...I don't know how yet, but my mission is to somehow find a way to inspire others to do this as well. Pay it forward, one small act of kindness at a time and we'll all take care of each other. If I could put that in a job description with flex hours and great benefits I'd be good to go! I'll pray on it, hopefully you will to & God will unfold more of his plan for me.

Cost of Care will be after the Finance Meeting and a few follow ups this coming week. I think it'll be good and help everyone, even those with "good" health insurance understand just what kind of critical financial state this kind of condition can put you in.

As always, Be well & God Bless! Take care of each other.

Posted on October 31, 2014

Posted on October 31, 2014

Posted by Gwendolyn Westlund w/ Bob Westlund & Friends of Giving for Gwendolyn - Collective effort of research & other's survivors advice to patients, care givers, family & friends.

Words of Wisdom...

*Patience for patients and family, for your family to understand that you are not suddenly well & patience with yourself in the recovery process.
There will be ups & downs, two steps forward, one step back & it may take awhile to discover who you are again and what you want to do with your new life. For some longer than others & more ups than downs, etc. Be not afraid!

Never give up and educate yourself.

Don't be afraid to ask questions....before & after transplant

To the family: be patient, let the patient know their body, nobody knows it like them - let them decide when they are well or not; to the patient push yourself post transplant and pre tx take care of yourself as you will need to be strong to heal quickly:)

*Doctors are not always right, and don't often listen to you. You need to understand your health so you can ask questions and advocate for yourself!

Listen to your body. It will tell you things that your doctors will not understand. Be thankful for everyday you are given. It is a gift, not a cure.  37.5 years and still learning. You never know everything. You learn & grow every day. Be humble, you are never smarter than the next person. Listen to others, because they will also be listening to you.

*Transplants are not a CURE but a treatment with challenges of its side effects, limitations, rehab, dietary & evironmental restrictions & rules...

Ask questions Ask questions Ask questions. Stay strong pre-transplant and keep your faith.

*Know that you are going to experience feelings other than gratitude, happiness, and faith. But it's ok & to be expected. There will be times in the journey that will make you question your worthiness and attitude. But you will get over it. It is normal and it’s ok to feel those things.They should give prior warning to the medicine causing mood swings, and a variety of other side effects that will alter life as we know it.

*Each day when you feel that you’re at the end of your rope, miraculously the next day there is a thousand more feet of rope. So hold on. Transplant gives a whole new definition of normal.

*To the family I would ask that they search deep down in the crevices of their soul & try to imagine what their family member is going through. Offer patience, love & understanding. To the patient, your life may be completely upended, but surviving such a trial will make you appreciate life in ways that many will never understand. That is the gift you receive after the trials of transplantation.

Congrats on your listing. Now comes the wait....
Be patient, get all the info. You can, have others with you when you meet with the Dr.s (it's always good to have 2 sets of ears), ask them about all medications and their side effects, and get things in order. Not to be doom and gloom, but I made sure to have everything in order...Just in case. Good luck to you on your journey!!!

*When my daughter was awaiting her very ill...I remember her nurse told my privately. ."She’s going to go through a lot but just listen to her and support her because when it’s over she's going to come through and be fine"..She did come through..a TAH and 6 months later a heart transplant...and I learned to listen...2.5 years later she's happy and healthy..and I'm totally honored to have gone through that journey with her

Never give up!

*There are no bad questions. When being given instructions, record them. Post transplant memories are sketchy, some times... :-)

*Stay positive! Seems so trivial, but getting dressed was an effort. Probably the worst thing for me was watching my husband watch me--dying. I knew I'd be okay, but he didn't have that peace. It almost broke him apart. I will never forget how hard it was on him. Loved ones feel so helpless and need support too.

To family members know if the patients mood changes its not you its meds. This is one I struggled with.

We are all different, each transplant is different, and always ask questions of your doctor.

*Take someone with you to your appointments, record it if necessary, easy to miss or forget some things.

*Congrats!! Umm piece of advice...although tx is a good thing you need to look at all angles of it the good and bad. But especially that sometimes you trade one disease for another, set of pills for another, side effects, etc.

*Keep a note book...write down EVERYTHING...this gets you ready for doc appts, keeping track of symptoms...meds, side effects, blood meds, old meds, diet, blood pressure...mood swings, fears...just write and write...a new mole, trip questions, just anything you can think of...

:)Connect with others to make sure you utilize every avenue!

~ Really wishing we had read through UNOS & Transplant support groups & reached out for advice prior to all of this. It's often very isolating. Everyone is very supportive in the beginning & are so overwhelmed that you're alive & have gotten this gift that they often fade away quickly. Not out of disrespect or lack of caring, but just as a weight has been lifted & they are able to return to their own "normal". It's hard to celebrate a 1st heart birthday when you're really not feeling like you've accomplished much or that it's a big deal. It's depressing to not drive, be stuck in the house, & your only social life is your best friend & mom taking you to Doctor's appointments. I'm so very grateful to be alive & I find that trying to pay it forward and raise awareness for organ donation & patient awareness and rights.

It's small things in the scheme of things, but I will never be "normal" again. I can't have babies because carrying one will likely kill me & I probably can't use a surrogate because my eggs are damaged from stress to the body, years of medications & radiation treatments, plus the risk I put myself at just retrieving the eggs because no one told me to harvest prior to transplant. I can't take a vacation on a whim or eat what ever I want...& what's funny is I'd really love a strawberry crepe or salad I don't have to make at home. I MISS STRAWBERRIES & BLACKBERRIES!! I can't do a lot of the volunteer activities I used to do because they involve small children & my imune system is suppressed. I'm tired after showering and getting dressed...most days I wear yoga pants & a tshirt, so the days that involve a blouse & nice jeans or slacks are extra exhausting! I have an amazing husband who is extremely sensitive to all of this & great friends too, but not everyone gets it. I can be grateful for all that I have & know how very blessed I am, while I still feel exhausted with aches & shooting pains and migraines and mood swings and fat and puffy and all around gross and sad & cry some days because the white picket fence and two kids with a freaking puppy isn't gonna happen!!!

But lord how I'm blessed! I have Bobby, Pam & Matt & my light - my niece Evie, my Mom, my Papa Bear, Jerry. In-laws who love me and are kind, I have one of my sisters at least half way in my life & another amazing niece I get to see weekly. I have Rob and Stacy & Kenny, Billy & Heather, and other amazing friends. We belong to a wonderful church, Parkview Christian Church, with Pastors that go above and beyond & wonderful members like the Reh family & Thompson family. I have causes I believe in and I am willing to fight for and I am getting more involved with....and next February I'm going on my first all grown up vacation - not a family trip with driving, lunch boxes, and children - a VACATION, courtesy of my all to generous father in law, & I'm going to see the ocean!!! Cross one of the bucket list.

Bottom line, I'm lucky to be alive, I know how extremely blessed I am & I am grateful everday, even the bad days...I'm trying to pay it forward and I guess I just really need some patience and understanding...I am not just magically better. Think how you would feel if it were you or one of your children or your spouse! I pray it never is.

For anyone who actually reads these - thank you & as always please share the post, ask your friends to reshare or tweet or email. Maybe it'll give perspective to some other patients and families.

Be well & God Bless.
Gwendolyn W.

Posted on October 27, 2014

Posted on October 27, 2014

Posted by Gwendolyn Westlund

My 1st heart birthday weekend! 10.25.13, our prayers were answered & I received the gift of life & received a heart transplant because someone out there decided to be a registered donor. I thank God everyday that I'm here & I'm lucky enough to have some truly amazing people in my life.

I have some really good days, luckily this weekend was full of them, & some bad days & set backs - like today recovering from pushing it this weekend, but everyday I'm grateful to be here & thank God for this chance, just wish some days were easier...& I'll get there, I still have cardiac rehab through the end of the year & then we can option to pay for phase 3, which may be necessary but not covered by insurance.

Worry about it later...because this weekend was amazing & so much fun! The pumpkin patch with my bestie Pamela Overgaard Rocco & family, including my baby love, Evie! Fun out & about with the love of my life, my hubby Bob Westlund & finishing the weekend with a football smoker political action party with our very good friend, Rob Rathke. Met Attorney General Lisa Madigan and hopefully she'll be a supporter of Giving for Gwendolyn, #Donatelife, #Hatethewait & Costofcare! Lot's of love, cards, postings, & gifts - heart shaped food items, etc. from dear friends & family and I couldn't be more blessed!

Posted on October 19, 2014

Posted on October 19, 2014

Just found out I have like six pictures from my transplant surgery! Gross, but also super cool and grounding! Really makes you think...I mean I've died on the table over three times and they pulled this football sized malled heart out of me. If that's not a miracle, I don't know what is.

I get to wake up every morning with my soulmate and go bed each night with him. I have friends who are more than family to me, like sisters, and their children, my nieces and nephews.I get to see my sweet miracle niece Evie grow and change everyday! I'm so blessed in so many ways, but esp. to have two very dear friends who consistently stand by me and push this cause - Rob Rathke & Pamela Overgaard Rocco, God Bless & I love you guys. 

Posted on October 11, 2014

Posted on October 11, 2014

Before I start my update I'd just like to say how grateful I am to all that have shared our fundraising page, read the updates, and prayed for us. It's October & on the12th, Bobby & I celebrate our 2nd wedding anniversary which is amazing and by God's grace one of very many more. Even more importantly and joyous on Oct. 25 I will turn 1 year old for the 2nd time, because an organ donor saved my life! Please if you aren't a registered donor do some research, sign up today, save lives!
I'll post lots of funny pics from the birthday festivities! Thank you!

That said this is the last official month of the fundraiser and we ask that everyone really rally together to spread the word, share anyway you can and ask that others do so, ask that they donate even $1, we could use any help we can for Gwen & Bob. Thanks to everyone who's shared and donated & prayed for your continued support! Go Giving for Gwendolyn!(P.R & Friends)

On to the update, well I'm usual. It's been another month and lots has happened since last months kidney stone fiasco tured intenstive care unit reunion. Lots of follows ups have been made, but not all.

Cardiology cleared me after my insident in ASHU. Then I met with my new Urologist, and he was very thorough, I told him the issues with the previous procedure and he assured me that the anesthesiologist, transplant team, & infectious disease would all be on board the day of surgery & they would agree on a plan prior to surgery. I was so relieved. Then I got a call from the transplant team and they said the tx doctor would check on me in recovery, & I was a bit offset because the plan to the best of my knowledge was to keep me overnight for observastion so as to avoid another trip to ASHU. Well, the tx nurse gave me a hard time and said that it's the primary surgeons call & I need to call him, the Urologist, if I have an issue. After the Urologist called me back, he was not pleased, as my tx team couldn't get their crap together and put it off on me. They had apparently discussed this in a meeting that afternoon. Anyways, the lack of coordination didn't inspire confidence & I was a bit nervous, well more nervous than usual. They ended up going in with a scope blasting and removing three stones & the stent & leaving two stones adhered to my kidney wall. If they'd tried to remove them it could have caused internal bleeding, but they aren't an issue for now. The Transplant Cardiologist came to check me in recovery and my pain level was inhumane! They wouldn't give me anything!! Finally I was crying begging for them to just knock me out & they ended up admiting me so they could give me small amounts of meds and monitor me. I was out the next evening and a couple days later pretty much pain free.

I had my sleep study done & they did find that I had respiratory issues, but not enough to qualify for the apnea mask. I also can't get into a good rem sleep. Dermatologist check went well, no cancer detected, but they're watching a couple freckles. I'm also on a whole new skin care & treatment program for the acne which seams to be helping - THANK YOU! As for the chest scaring and burns, I've been referred to a plastic surgeon, so that appointment needs to be made. The Endocrinologist also went well, my thyroid meds were adjusted mildly, but the exciting news is the diabetes is gone! No more blood checks or insulin!

Due to the Kidney issues, some of the follow ups had to be pushed back and are later this month. OB/GYN: ovarian cancer blood test, nexplannon decision. Hematologist: general blood check and decision on bone marrow biopsy or not. Dentist: final cavities done from tx check and caps redone.

"Annual" biopsy was 9.30.14, a month early...but everything looked good, no rejection, all blood work looks good, & meds are all the same, which is fine...but a little disappointing that my prednisone isn't lowered anymore.

My blood work will now go to monthly and my next biopsy will be at the end of December - around Christmas!

In the mean time I have plenty of follow ups and specialists to see. I saw infectious disease Dr. after second kidney surgery and got the all clear as well & my flu shot. I will go back again in November & December for continued Hep A and Hep B series & various other vaccines they deem necessary.

Also, got my extension for cardiac rehab through December 30, 2014, which will cost a bit, but it's awesome in the long run because I've had so many gaps & really need a full rehab to get myself in a better physical and mental state. Please pray for no more issues to keep me from rehab!

Again I'll post some fun heart birthday & anniversary pics! I'll also try to update as my follow up appointment come up. I'm so very blessed to have an amazing Mom, husband, family, & friends - Roccos, Kweders, Bennetts, Rathke, Marx, Capps, Beyers, Robertsons, all of you so much! Please pray & thank God for every day we're all here.

As always, Be well & God Bless.
Gwendolyn W. & P.R. & Friends

Posted on September 6, 2014

Posted on September 6, 2014

Posted September 6, 2014 by Gwendolyn Westlund

Well sorry it took me over a week to finish the update. A bit of a bump in the road while in for kidney stones. The stent was placed successfully, however the pain was 3x worse afterwards. The UTI is under control, however the Urologist and I seemed to disagree on what level of sensitivity I have towards pain medication and anesthesia, which I would've properly explained had he met with me pre surgery as standard procedure. I remember talking to the nurses in pre-op room, the resident, the anesthesiologist, but apparently this guy introduced himself in operating room. Don't recall anything but a flash of a guy sitting in the corner in scrubs who looked like santa clause - apparently that was him.

That said when I'm in a great deal of pain, it's hard to control with out doing damage elsewhere. Long story short, I asked the nurse to double check w/ Urology re: pain med, knowing my sensitivity, she did & the doctor confirmed that was the best option.

I don't recall but a few flashes after that, but from what I've gathered, I stopped breathing in my sleep and coded, cpr was performed for about 1 minute and I was back up. To be clear, my heart rate was very low but never completely stopped. Next thing I really recall was waking up in ASHU, again. Super suck. Now they're keeping me a couple days for sure. At least my peeps in ASHU know me, I'm safe here. I feel calm here.

When I get back up to recovery floor, I've got the feeling a mack truck has driven over my chest and ribs, the stent pain, kidney pain, and new pains from the antibiotics and side effects with no heavy meds so as not to kill me. YIKES!

For some reason my oxygen saturation levels are low - in the 80-90% range with out an assist. They won't let me leave until I can urinate on my own - with out foley catheder and breath on my own at least over 90% saturation. Mean while they'll check for other problems, chest and lung xray and catscan - no lung problems, no clots, no broken ribs, etc. Ultrasound on my arms - blew a couple veins that are hard as rock now - checking for blockage and clotting, nothing found there. Just have try to practice deep breathing, but the pain is so bad - got to suck it up if I want to get out of here.

Foley Catheder removed, we have success! Meds they are giving me to help drain kidneys are crazy...dry mouth, feel I have to peel my tongue off the roof of my mouth, that with pain meds & iron, antibiotics - nausea and backed up system. One thing at a time.

My oxygen saturation is 91% not great, but enough to send me home. Blood work is coming back clean, my predisone is lowered to 2.5 2x daily, prograf is lowered to 2mg daily. First change in over 6 months.: ) Given oral antibiotics for next 3 weeks, zofran for nausea, various intestinal medicines, as of the 1st it's been over a week. Too much medicine!!!

September 1st, being discharged!!! Long weekend has been shot, but at least Bobby was able to stay with me each day. It would have been that much more awful if he was at work the whole time I was in there. So blessed to have such a wonderful husband, friend, and partner in life. You're my hero & my light babe!

Follow ups next week: Cardiologist, Urologist - different partner with group, probably schedule stone & stent removal at that point as well, Infectious disease. 

TX related this month: Respiratory - sleep study, dermatologist - skin cancer check, prednisone induced acne, scars and burns from surgeries on chest. Endocrinologist: thyroid & prednisone induced diabetes. OB/GYN: ovarian cancer blood test, nexplannon decision. Hematologist: general blood check and decision on bone marrow biopsy or not. Dentist: final cavities done from tx check and caps redone.

"Annual" biopsy 9.30.14, a month early so any kinks can be worked out before my 1st rebirthday!

Definitely post again after next weeks follow ups and as the appointments and results come in over the next three weeks. Sorry this was a long one! Lots can happen in a week and lots to be thankful for everytime I'm pulled back from the brink...wish I could tell you I saw something miraculous on the other side, but the only miraculous thing I remember is waking up and seeing my husband's grateful, relieved, adoring face as he took what seemed like his first breath since he got to the hospital. I'll take it. Thanks God!

Thank God for my Mom for helping out as always, she has no idea how many times she's saved Bobby and me, especially Bobby when I'm in these scarry situations. Dad Westlund & Sandy thank you for the visit, love and support. Rob, thanks for all the shout outs and keeping people posted. Friends on ASHU & 9EW, thanks for keeping an eye out & watching over me. Ray Y. Thompson & family, thanks for being friends and fellow Christians and getting me on the prayer list at Parkview Christian Church as soon as you heard. Prayers work, I'm still here...again! Thanks PCC for praying for me! Always thanks to the Kweder family for helping whenever and however they can. I don't know what I'd do whith out a few who do so much! Pam, just for everything as always, thank you, hugs, love, holding my hand, sending Evie pics, whatever it is, you're awesome and I love you.

I'm sure I forgot tons of people & I'm sorry. I't taken me over 2.5 hours to try to rihgt this and I wrote notes a ahead of time. My brain gets a little bit slower everytime I'm put under.

As always, Be well & God Bless!
Gwendolyn W

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