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Posted 6/9/2014 by Gwendolyn Westlund
Well, my last biopsy was at the end of May and came back negative…Yay! Blood work looked good for the most part & I’ve started cardiac rehab. It’s going pretty well so far, no major issues. Just exhausted as usual, though the air conditioned setting of the cardiac rehab center helps. The heat seams to really affect me, walking outside when it’s over 75 degrees or under 50 just doesn’t seem to agree with my body. But I’m doing the cardio 3x and then toning & weights on the other 2 days. So I’ve started with what most people look for the immediate results. Little bit of fundraising & fun info below and then just a wrap up of what’s coming & thank you to all of our supporters. Keep reading…God Bless.
May 16th, one of my best friends, Rob Rathke, went to Anderson’s Bookstore in DT Naperville to champion my cause yet again. Paul Stanley was there for his book signing and the cameras were going to be blazing! So Rob pulled out his Paul Stanley costume – which can hardly be called a costume, it’s truly a piece of art – and came over so I could “make him Paul”. It took me over 4 hours & I had to take breaks every 15 minutes….normally it would be a two hour job, but I got it done. He looked more like Paul than Paul did, people were taking pictures, and asking to take pictures with him, they took video & posted to Paul Stanley’s various Facebook pages & websites! Rob went on and made sure to post that this was the reason he did it, to help his friend, his “sister”, & more importantly, his makeup artist get better & pay for her meds & bills & get her life back on track. Anderson’s donated $100 & said I made the night. : ) Anyone Rob took pictures with got a fundraiser card with my information on it & so did Paul…the real one. His buddy Mike took a good deal of pictures and handed out a lot of cards too. Thanks Mike!
You’ll notice there are some pictures of him posted with Paul here on the site so you can see. Rob was also highlighted in Naperville’s Glancer magazine & its Facebook page & most exciting, The Loop Rock Girl tweeted about Rob’s little stunt the other day and included my fundraising link…hopefully we’ll see some new visitors soon, she has a large following. Thanks again, Rob…above and beyond.
Well here’s what lies ahead, rehab is 3x a week for 3months and my next biopsy is at the end of July. For now I’m at 5 prednisone 2x day. They may take my dose down again after July results. Unfortunately still on blood thinners for now…Ultrasound of legs in two weeks, more blood work, & possibly a bone marrow test depending on what the blood results show, I told the doctor she will have to put me out for that or it won’t get done…EEK! Then back to Hematologist for another checkup & plan going forward regarding blood thinners. Also, need to hunt down my old radiation records for new hematologist & ob/gyn. The office I’d received treatment at closed & the doctor is no longer in state. UGH…just more unnecessary work. I also have checkups with the Endocrinologist (my thyroid checked, my calcium, & my diabetes status), the Oncologist for a work up (missed my last annual appt. as I was getting transplanted), annual mammogram, & finally get to go to the dentist! I had to wait at least 6 months after transplant, but they had me get checked & deep cleaned the eve of transplant, been living with these cavities for too long!
Anyway, lots of Doctor appointments…nothing new, trying to schedule what I can while I’m at the hospital for rehab to save trips. If I know anything it won’t be until the end of the month, but I will update the page again with anything I know…even if it’s just an “all clear”.
Thanks to everybody out there who sends love, prayers, positive thoughts, etc. to me and my husband. Thank you to all of you and thank you God!
Say an extra prayer for my husband, Bob Westlund, he is so much more amazing and so much stronger than he knows. I think he’s so much more a man & a really good man, than even those closest to him realize. He’s had to be everything, my friend, my partner, my love, my nurse, my babysitter, my cook, my bather, he has let me cry and let me yell, he’s paid the bills & done his damnedest to make sure I don’t see him worry, he’s has taken it & done it with more grace than anyone could expect of a man. My husband is a true man, & more than that he is a prince among men. He & my mom have been my main caregivers through all of this and they both deserve so much admiration & respect for keeping it together, being both loving & tough, & I thank God for them every day. Thank you God for my awesome friends and neighbors, Ken & Stacy Kweder for watching over me & helping with rides, schedules, & grocery runs, etc., for my “sisters” Pam Rocco & Tina Beyer for doing all they can to help me with whatever I need & making sure I get to see my niece, Evie. Thank you God for contact with my sisters T & M and allowing me to know my niece, Delilah…it’s a true blessing! Thank you for allowing me to meet my niece Amelia & see my nephew Seamus again, to live to see them & be an Aunt to not only Bob’s three beautiful nieces, but now all these new little lives…it’s more than amazing. Thank you for Rob, my friend, my champion, the poor guy who ends up taking me to the store. Thank you for my extended family, Bob’s family, Aunts and Cousins who call and pitch in whenever possible. Thank you to my wonderful FB friends, nurses and staff, Parkview Church members & fellow patients & their families. I don’t know that we would have made it this far without all of you. I still have a way to go, but everyday we come further into the light. October is my 1 year “heart” birthday and they say I’ll be feeling much better, let’s believe that’s true & pray for it and hopefully the rest of it, the bills and the other health issues will fall into place.
God Bless & Be Well.
Posted 5/10/14 by Gwendolyn WestlundShare This Update!
Well, I'm a bit late on this one, but I did post directly to facebook with my biopsy results, not that it's the same the same thing. My apologies.
I had my biopsy on April 29th and it was negative, blood work looked good as well. Prednisone was brought down to 5 in the morning and 5 at night...we're getting there. Moonface has gone down slightly, but the chin not so much....still dealing with the acne, insomnia, weight gain, dark hair, & puffiness. It helps to know that I'm not the only one. My transplant survivors group has been very helpful.
Unfortunately, I have been dealing with another round of sinus infection & migraines. Zpak was prescribed for anitbiotics and I'm starting to feel a little better, but I feel like every time I get rid of one thing I get another. Last month I had all the similiar symptoms, low grade fever, aches, chills, sinus headache, & this time my dry cough turned wet and I had little to no voice.
While I had a wonderful birthday weekend, I probably picked something up while we were out. I wore my mask and gloves but you can only do so much...without locking yourself in your house forever.
Oh well, feeling better each day as the Zpak works. I should have my 2nd blood panel back by Monday as well and that should tell us if my white blood count is back to normal.
I'm scheduled to start cardiac rehab (finally) on May 22nd...that's my first appointment to assess me. Then three times a week for the next three months. Next biopsy is May 27th and if that's negative than I will start going every other month until I reach my one year "heart birthday" in October.
Finding rides has been less than an easy task for rehab. We don't qualify for certain programs because we aren't "poor enough" as the cs agent told me and private medical cars (discounted) run $95+ each way for less than 15 mile / 30 min. drive. Luckily my awesome neighbor Stacy is trying to make a schedule for my friends and family to each take a Thursday of the month to help. We will hopefully only end up paying for what's absolutely necessary. Bobby will have to take me in the morning before work & on Saturdays and my Mom will take me on Tuesdays.
Anyways, thank you as always to everyone who has prayed and helped whether with rides or donations, cooking or cleaning, or just sending an encouraging word. It means a great deal to us as we continue on this journey towards recovery with unexpected "speed bumps" along the way.
Be well, God Bless, and Much Love,
Posted 4/2/14 by Gwendolyn WestlundShare This Update!
Well another month come and gone and spring is "technically" here. I had my biopsy on March 25th and results were negative, which is great! Blood work looked good too.
Slight step back this week, I've been feeling ill the last few days and Monday I had a low grade fever, congestion, sinus headache, aches, chills, & dry cough. My home nurse, Danuta, called the transplant team & they had me come in yesterday to check on me, ran labs & my white count was high. My wonderful husband had to take a half day to get me there and back and of course take care of me...thank you God for Bobby...I truly hit the jack pot on that one. I was given broad spectrum antibiotics, and will hopefully be better in another day or two. Otherwise, back to the hospital. All symptoms are the same today. I'm sure it's just a bug.
Good news, since biopsy was negative & heart seems to be taking well, my prednisone has been lowered another 2.5 mg daily. Yay!!
Unfortunately, they take me off of or lower one med & then generally need to put me on something else. I gained 2 more vitamins, 1 new prescription for blood pressure, and they upped the dosage on my migraine medication.
I'm also still dealing with some weight gain & puffiness, which will hopefully start to subside with lowering the prednisone. Still having issues with the shakes, weight, fatigue, and migraines, which could be from any of the pills, a combination of them, or just from the stress on my body from multiple surgeries & anesthesia.
Again, the doctor's keep telling me at 6 months patients generally should start to feel and see improvement, and at 1 year most can expect to feel better than they have in at least a few years. Thus far I don't know that another 4 weeks is going to make a huge difference in how I feel, but everyone is different and I just heal slower than most, but it's something to look forward to...especially since my 6 month birthday & my actual birthday are both at the end of April, so we'll have a weekend celebration.
My next biospy should be April 22nd & will hopefully be clear again & I will be moving on to phase 2 of my recovery, which will include cardiac rehab in May, though they keep bumping it back. I have a social worker coming this week to see if there's any assistance available for rides to Christ in Oaklawn for rehab, so I'm praying she'll come up with something because finding rides 3x a month is hard enough, 3x a week...nearly impossible. For the time being, my home nurse and physical therapist are still coming a few times a week. Any changes along the way, I'll update again.
Bob and I are doing well together, thank God I have such a loving & supportive husband. My mom and my in-laws & extended family, my neighbors - Ken & Stacy & their family, my friends - Rob, Chuck & Sherry, Pam & Matt, Tina & Donna, Lyzzi, Ray & Amanda. Really everybody who's shared the fundraising page and asked others to share and pass it on, everybody who's donated, everybody's who has prayed....Thank you!!! God Bless You!!! I love you all for everything and please just keep on doing it. I'd also like to thank Parkview Christian Church for opening my eyes and heart to a spiritual connection that I thought I'd lost and for welcoming me and Bob with open arms back into the fold and making us feel at home.
Be Well, God Bless, & Much Love. I'll post again soon with updates.
Posted 2/27/14 by Gwendolyn WestlundShare This Update!
Happy New Year everybody! Holy smokes, it's crazy that it's almost March. I feel aweful I haven't posted an update in so long. I was hospitalized again in January with some kind of infection and horrible migraines...they did a spinal tap to rule out encephilitis and meningitis. No fun at all, but it was clear so that's good news. It's been a month with no severe problems and no rejection so things are looking up.
February 25th was my last biopsy & it marked my four month anniversary for my new heart! It was negative, which means my prednisone level comes down another 2.5mg. Super exciting because every time they lower my dose my shakes lessen & my hopes of my moon face dissipating becomes more of a reality. I'm very excited about this!
In general I'm feeling okay. I wish I could say great, but that's not true. Still a lot of kinks to work out & it's day to day. Transplant team says 6 months I should start really feeling better, especially once I start cardiac rehab. I can deal with feeling okay most days - it beats the alternatives. : )
Now I do a monthly biopsy, unless of course there's a problem, which we don't anticipate. I still have tests & follow ups with other specialists for blood clots and uterine cysts, prednisone induced diabetes & hypothyroidism, infectious disease immunizations, etc. But that's all part of the deal and nothing I can't handle...just time effort and finding rides.
For now the transplant team wants to keep my home nurse and physical therapist coming, at least until they clear up the blood clots in my legs, then they'll start cardiac rehab. They're thinking they'll start me in late March or April. That'll be three times a week in Oak Lawn. Rides will be harder to come by at three times per week, but maybe I'll be able to drive by then.
Anyway, luckily Bob and I are doing well together. I have such an awesome husband and am so loved by such a wonderful family. My mom and my in-laws, my neighbors - Ken & Stacy, my friends - Rob, Pam & Matt. Everybody who's shared the fundraising page and asked others to share and pass it on, everybody who's donated, everybody's who has prayed....Thank you!!! God Bless You!!! I love you all for everything and please just keep on doing it.
I will do my best to post again soon, seeing as I seem to be feeling a bit better.
Poste d 12/17/13 by Gwendolyn WestlundShare This Update!
Well it seems my overnight stay for surgery turned into a week long hospitalization. I was admitted on the 6th & I wasn't released until December 12th. With minimal immune system I managed to get a bronchial infection and my white count was elevated. In order to have the surgery on the seroma, which was scheduled for Monday, the infection needed to be rectified immediately. My seroma surgery was successful and with any lucky it won't reoccur. I also gained another leg clot and unfortunately will have to be on blood thinners longer than expected.
I have another biopsy today & hopefully all will be clear and go well. Say a prayer for me and I'll update again soon. Thank you to all of the family, friends, and those unknown to me for the love, support, and prayers! Please feel free write words of inspiration or just say hello in the comments section. I'd love to know someone out there is getting my updates.
Much Love, Gwendolyn W.
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Posted on 12/5/2013 by Gwendolyn Westlund
December 5, 2013
A brief update to bring you up to speed on the happenings over the last month.
I have now had over six biopsies and fortunately have only experienced mild rejection thus far. Though we did need to adjust medications rather agressively a few times and I was readmitted twice, things seem to be calming back down. I have also been dealing with two blood clots in my left leg, along with a significant seroma near my inner hip, both of which will hopefully be corrected in surgery on Tuesday, December 10th. I should not need to be hospitalized for more than a day or two, or so I'm told, but could very well be outpatient.
We all know how quickly things can change though, so please keep us in your prayers and we will post again next week as soon as we know how the next surgery goes.
I will do my best to post an update when something important comes up & Bobby will text as needed. In the mean time please continue to pray and/or think happy thoughts!
Just so you are aware subscribing for updates will get you an auto alert when a new post is made, so you are always kept current.
Much love, Gwendolyn W.
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Posted on 11/01/2013 by Gwendolyn Westlund
November 1, 2013
I would like to start by announcing that I did, in fact get “the miracle call” last week and on Friday, October 25, 2013 at approximately 8am I was given a new lease on life with a successful heart transplant! The stars must have aligned as we were only hoping to be moved up on the list, (giving us better odds for 30 days) and by the grace of God, I got a heart that morning.
Everything seems to be running much smoother with the transplant recovery. Yesterday I had the first biopsy for rejection, results were negative, and so we are off to a promising start. We will try to post updates as they become available but for now all we know is the average hospitalization period for transplant is 14 days. We all know how quickly things can change though, so please keep us in your prayers and we will post again as soon as we have something definitive to share.
As I lay here recovering my heart is filled & I am overwhelmed by the abundance of love and generousity that have been shown to Bob and me throughout the trials with my heart disease. Please continue to share this link and support all of us in this effort!
More than anything I just want to let everyone know how incredibly blessed we are to have all of you and how overwhelmed we are with this gift of hope & love. Over the next year in particular we will likely have a minor bout of rejection, some possible illnesses due to my immunosuppressants, and weekly checkups. I will do my best to post an update when something important comes up & Bobby will text as needed. In the mean time please continue to pray and/or think happy thoughts!
Just so you are aware subscribing for updates will get you an auto alert when a new post is made, so you are always kept current.