Dear Friends and Family,
We are writing on behalf of our son, Doug Bertschy. He is 32 years-old, a beloved son, caring brother and a devoted uncle. He has a huge heart and tries his best to help others whenever possible.
Many of you know that Doug has Multiple Sclerosis. He was diagnosed in 2004 when he was 23 years-old and studying at The University of Cincinnati. His first MS attack necessitated leaving school for recovery and rehabilitation. He returned to complete his courses and graduate in 2005. Doug worked during college and after graduation for the Queen City Club in downtown Cincinnati. Over the next 9 years his MS flared multiple times in spite of medication. Doug was flare-free for nearly 5 years until he needed to stop a potent MS medication in 2011 due to the increasing danger of a life threatening side effect. In early 2012 without his MS medication he had a serious flare that has him using a rolling walker, unable to drive and dependent on others for daily needs.
Doug is a candidate for an autologous stem cell transplant to stop progression of his MS. The procedure is a clinical research program at Northwestern University in Chicago. We are confident that this is the best option for Doug at this time. Currently there is no cure for MS and medications available have only a 20 – 50 % record of preventing relapses and equally poor record for secondary progressive MS. Doug has been on several of these less than optimal medications in the past.
We sought insurance coverage for this procedure in 2012 and completed an appeal/denial process with a final denial in September. We are now seeking a response from new coverage but understand that even with approval full coverage of a research procedure is unlikely.
We anticipate many uninsured medical expenses up to and including the full cost of the transplant, approximately $125,000. We are determined that this summer is the time to move forward before any further loss of function besets Doug. At this time, the support of family and friends is critical to ensure the hope of accomplishing Doug’s transplant.
To ease the financial burden, a fundraising campaign in Doug’s honor has been established with HelpHOPELive, a nonprofit organization that has been assisting the transplant community for 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Great Lakes Stem Cell Transplant Fund, and administered by HelpHOPELive for transplant-related expenses only. Your contribution would be greatly appreciated.On behalf of Doug and our family, we thank you for your kindness, generosity, support and prayers.
Norah and Lloyd Bertschy
TERRIFIC NEWS received on 6/13 – Our insurance will cover the transplant!!!!!!!!!!!!!!!!!!!!!
We still expect a fair amount of expense on our part but the bulk of the cost will now be covered. We have therefore adjusted our goal to relect this news.
Praise God from whom all blessings flow…………….. we are so grateful for your support and prayers it is very uplifting for Doug and our family.
The Transplant is scheduled to start on Friday, June 21.
Doug and I are in Chicago now 1/2 through the 1st part of the transplant procedure – he’s had 1 dose of chem and now on Neupogen to stimulate his stem cell production – the stem cell harvest is to be on Monday 7/1 and then we will leave Chicago for home when he has donated enough. We will return to Chicago on 7/16 for the 2nd part, more chemo and then 9 days after re infusion of his stem cells. The theory is that the chemo will destroy his current immune system (source of auto immune disease like MS) and “restart” a new immune system with the cells. He is doing well so far – more tired than usual and starting tomorrow we will have to be more careful to avoid crowds and sick folks. His hair is due to fall out late next week.
Thank you for your support and prayers.
We have been home since 7/2 and will be headed back to Chicago on Tuesday to complete the transplant process – the harvest was very successful so 7 million stem cells are available – tho the folks in charge think 2 million is the targeted number needed. We are anxious to get there and get the next chemo over and start the recovery process. Doug’s hair started to fall out last Sunday so we buzzed the rest off – now he is a bit itchy but not shedding.
Thank you all for your ongoing support and prayers – we are awestruck by the response from so many for so many places.
July 21st It is indeed comforting to know we are being upheld in prayer by so many. Tomorrow will be Doug’s new birthday when he receives his stem cells back. We have requested that the cells be blessed during the infusion – that is a service that the chaplain provides. Doug’s worst day/night so far was yesterday – mostly nausea and being “wiped out”, in spite of several anti-nausea meds the feeling has lingered. So he is having a hard time thinking of something appetizing to select for the past few meals – a peanut butter and banana sandwich has worked pretty well and pretzels. I believe that his nausea will improve over the next few days as he finished last chemo and all the meds that go with it yesterday and has 1 last day of rATG with steroids. The ‘wiped out” feeling will probably stay around for sometime has his counts will be low for another 7-10 days, then we’ll be OK to come home. All in all everything has gone according to plan and the staff here is terrific – wonderful nurses and assistants. His doctor and NP are very encouraging. We’ve gotten into a semi-routine, figuring out best time to order meals, get shower and walking in, etc. Doug’s quiet accepting nature also helps, he is not much of complainer. And so we wait for God’s healing through the hands and prayers of many. We have adjusted our goal on the advice of our HelpHOPELive coordinator in view of the potential for ongoing expenses in the next few years. Any donations in Doug’s name are available for lifetime. Norah
July 22nd WOW – what a day!!!!!!!!!!!! Today is Doug’s new birthday. This morning he woke up “ready to roll”. He got 3 laps around the unit in, breakfast, PT, and shower done before 10am. Premeds for transplant were given around 10:30; the Chaplain arrived, along with Dr. Burt, Amy his NP and a resident/fellow, then the tech from the lab with a large container of dry ice with the frozen stem cells on big cart. The preparation of the cells – thawing was done quickly and the transplant began at 11:02. It took about 30 minutes and Doug did really well – no side effects – sometimes patients (60-70%) experience a sensation in their throat and/or chest pain. Doug had neither and his vital signs stayed steady. He is no longer connected to IV and freer to move around without rolling IV pole. The PICC line will remain until discharge, available for possible blood/platelet transfusion as needed as his counts bottom out over the next few days – recovery of blood count is not gradual but all of a sudden in 9-11 days. When his counts are at a safe to leave level we will call our dear Lloyd to hit the road to Chicago to bring us home. And so we begin our wait. The nausea is less today thankfully, but his taste buds will take a while to return – so many foods don’t taste right/good. So far peanut butter and banana sandwich is his favorite choice and most anything chocolate. Good to know that the taste for chocolate stays strong. Doug shares this new birthday with two other men who received transplants today and of course the new royal baby, which Doug noted this morning as the news announced that Cate was in labor. So this is the technical side of the story – I’d like to also share the spiritual side of today….. We had previously requested the Chaplain to bless the cells not knowing exactly how that would be done. The Chaplain arrived several minutes before the group and the cells so she spent the time getting to know more about Doug, our family and how we got to Northwestern and today. I had placed the blue prayer shawl that Doug had received from Trinity beside him and she (Chaplain) commented on how beautiful it was – that comment sent a flood of comfort to me and Doug reminding us about all the thousands of prayers that had brought us here for this incredible day. How God had brought knowledge to these healers to re-start someone’s imperfect immune system – to bring hope to us for a better life for Doug and others, how we have been knit together for all time with all those who pray for and with us. During the blessing as she put her hands over the cells we were blurry eyed with tears of joy!! I hadn’t quite expected such a powerful reaction; I don’t think Doug had either. This is certainly a day the Lord has made possible!!! THANK YOU
July 25 Doug had rough day on Tuesday with nausea but everyday since has been better. Today we met a wonderful woman leaving the hospital today – she came all the way from Australia to have her stem cell transplant!! Also we met a young man from SE Ohio and a gentleman from England – all here for stem cell transplant – a new life!!!
July 29 – Day +7 Today it is 1 week since the transplant and most everything is pleasantly boring – “as expected”. The only ripple in the stream so far is a very low platelet count – 3 today, (normal 140-390) in spite of one unit of platelets yesterday. He got another unit this morning and they will recheck @2pm today to see if the count is improving. All of you blood/platelet donors – THANKS! Doug feels OK but we have to be super careful to avoid any falls, as any trauma could prompt a bleeding problem until the count gets above at least 20. His only other issue is sleeping through the night – he is being tapered off the steroids used during prep and transplant and unfortunately suffers a common side effect of insomnia. He tries to be quietly awake but it is long night and he has taken to snacking to pass the time – we have completely eliminated kettle corn as a late night snack due to the crunch and the crinkling bag – moved on to protein bars, trail mix and dried fruit. So between us we get 4-6 hours of sleep. But if this is the worst of it – we can certainly “do it”. Dr. Burt’s team is totally unfazed and “not to worry” attitude is very comforting. A positive side effect of the steroids is a growing appetite – which is OK for someone 6’1″ and 145lbs, he can easily handle many extra calories, unlike his Mom who is trying to combat the inactivity with walking the streets of Chicago. Thankfully the hospital is located 1 block from beautiful Lake Michigan and 2 blocks from the Magnificent Mile. So there is plenty to see – I’ve made 2 trips to Target, which is about 14 blocks south of the hospital and plan to try the Lakefront path tomorrow when it warms up a little more – it was the coolest July weekend on record. We continue to be astounded to be here and have this incredible opportunity. We have met 2 men with CIPD, a neurologic disease somewhat like MS but affecting peripheral nerves instead of central nerves. Bryan is from Corning, OH and has started a blog about the stem cell transplant –www.bryanhinklesct.blogspot.com. His blog captures much of the transplant experience – the protocol for CIPD patients is similar to MS with a few exceptions so his story is very close to what Doug has done and will encounter – Bryan is 1 week ahead of Doug. The other gentleman and wife we have met are from England, they have come so far to be able to conquer his CIPD. Last week when Bryan was discharged – another Dr. Burt patient was able to leave also – she is all the way from Australia – she too has MS. It is truly amazing how families find their way to Northwestern. Certainly the Lord has led them here.
Dear Family and Friends,
I am extremely tardy in this update and I apologize. Doug got the thumbs up to leave the hospital last Thursday. His white blood cell count had reached the “outta here” number by afternoon. I had warned Lloyd Wednesday evening that we might get the OK in the morning, so when I called he had his bag packed and was ready to head to Chicago. We actually left Northwestern about 5 pm and drove out of the city and stayed near Hobart Indiana (exit 253 on I-65). There are multiple options there for food, lodging and shopping so Doug has decided we’ll stay there again.
I think Doug was so happy to be “sprung” from our enclosure that he had a whole shopping list ready to go Friday am and of course there was a Target nearby so it was after lunch before we actually got on the road to Cincinnati. Since arriving home we have been busy catching up with all sorts of stuff and not getting to the computer until now. We were able to attend church on Sunday, Doug sat in the way back pew and took communion from pew, wore a glove on his hand for passing the peace and smiled and chatted from a short distance after the service – everyone was so glad to see him and his chrome dome .
He tires fairly quickly as his red blood cell count is still low, white cell count rising and platelets in normal range now. Biggest issue is frequency and urgency with bladder – we just found out why today – he has BK virus in his urine which can cause this nuisance – usually clears on its own and hopefully not long from now. As a precaution they want him to see an infectious disease doctor here. He starts PT and OT next week to regain and build up his muscles and balance, labs weekly for 3 more weeks and then every other week for 2 months.
It is truly amazing that such a really complex procedure has relatively simple followup needed. We will return to Chicago in 6 months and then at 1 year check – with annual check for 5 years.
We remain totally in awe of this summer’s events and so grateful for the thousands of prayers for Doug and our family. THANK YOU
OMG, it has been over a month since Doug’s transplant! All is going well – just finished the weekly blood checks, moving on to bi-weekly for 2 months. Doug is involved in 2x/wk physical and occupational therapy. Seems to be getting stronger and balance improving – we are awaiting all the possible benefits of getting coordination skills to the optimum. The whole experience is starting to feel like a dream – come true. Thanks to all of you!!!!!!!!!!!!
February 18, 2016
2/9/2016 – I can’t believe that it is now in the 3rd year since the transplant. I also can’t believe I have neglected to update this site for so long.
last year Doug had a good annual check – “still no new lesions since before the transplant” which is amazing. He is doing well and continues to be an avid newspaper reader, internet researcher and works out a few days a week at our local recreation center. He volunteers at church in the meal ministry and assists Lloyd on special painting projects. We continue to be grateful for all of our family and friends and your ongoing support and prayers.
March 16, 2015
Dear Family and Friends,
A quick update….. Doug had his 2015 checkup in Chicago last month and all is well. We were happy to learn that his MRI showed NO new lesions since before the transplant!!! Praise the Lord!!! His lab work was good also. We will not need to return until next year. THANK YOU ALL for your support and ongoing prayers.
September 23, 2014
Dear Friends and Family,
It has been over a year since Doug’s transplant. We had a successful checkup in Chicago in the Spring – Dr. Burt was pleased with Doug’s walking unaided and suggested another round of PT. Doug has been going to PT for a few months now to help with balance and works hard to motivate around as far as he can go. We celebrated his transplant birthday on July 22nd with a favorite summer frozen yogurt pie. We had great time in Santa Claus, IN and wore him out at Holiday World with his nephews (our grandsons). We continue to thank God for the stable MS situation and pray that it stays intact. THANKS to all of you for your support.
March 31, 2014
Dear Family and Friends,
We got back late Wednesday evening from our trip to Chicago. This was Doug’s follow up visit – the 1st since the transplant last July 22nd. All in all it went very well – Dr. Burt is pleased that Doug is able to walk unaided and his lab work and MRI looked good. His MRI did show 1 new lesion but Dr. Burt believes that it was there pre-transplant since there was no MRI done just before the transplant – the last one was in March 2013. Doug will be headed back for some more PT to work on his gait and strength as he lost some ground during this cold winter when it was too cold to work out in our basement. So he’ll get toned up with his spring training. Dr. Burt was comfortable enough with the findings to say that we don’t need to come back in July for 1 year check, instead we’ll go back in July 2015!
Thank you all for your continuing prayers and support – we know that there are so many folks cheering Doug on that all will continue to improve – they now say up to 3 years can show gains.
October 26, 2013
Time is passing so quickly it is 3 months since Doug’s “new” birthday. He has graduated from PT and will now be on his own to continue physical conditioning. His labs have continued to look good – his hemoglobin is at or near his pre- transplant level.
He has managed quite well through his first cold since the transplant. Doug is even taking an online graduate business course from UC. Most of the time he walks unaided, using his rollator for longer journeys. All in all everything is progressing as predicted.
We are so grateful for everyone’s ongoing prayers and support. Your generosity is incredible. THANK YOU
October 8, 2013
You are in our prayers!
Brigitte and Tom Dade
October 8, 2013
Great news that the insurance will cover the transplant. Doug and all of you are in our prayers.
Warren and Bonnie Wheeler, Asheville NC
October 8, 2013
Doug, We are sending all our positive energy to you. Miss you!
XOXO, Ari and Jamie Hendricks
October 8, 2013
Hang in there Doug. Love you brother man
Matthias Geraci, Bloomington, IN
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In honor of Doug Bertschy
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