The funeral will be followed by a memorial event when everybody who wishes to can share memories about Misha. The memorial event will start at 03:00 pm and will take place in Victoria hotel, Stavanger (Address: Skansegata 1, 4006 Stavanger)
We created the Memorial page for Misha, where you can read about ceremony, light the candle for him and order flowers. Colors of the ceremony: blue, white and green. The heart flowers will be from Misha’s kids, so, don’t order heart, please.
The funeral will be followed by a memorial event when everybody who wishes to can share memories about Misha. The memorial event will start at 03:00 pm and will take place in Victoria hotel, Stavanger:
If you are able to attend, please let me know so that I can arrange the ceremony and memorial event accordingly. I would deeply appreciate your attendance, and I know it may not be easy to attend such an event during the pandemic. Those of you who cannot come in person will be able to take part in both events online.
The funeral event will have a video stream and we will share the link closer to the date of the ceremony.
For the memorial event that follows the funeral, we will have a ZOOM video conference where all participants can share memories about Misha and show videos and photos. A video stream will also be available for those who wish to watch without participating.
We have received so much love and support during this journey and would love to bring all the people who care about Misha together at these events.
Almost a month has passed since Misha’s death, but in my mind it feels as though this is some kind of delusion: in a moment, everything will rewind and replay. I can’t believe that what comes next for me is a long life without Misha, without his smile, without him hugging the kids before bed. Tor said, “I really wish I could hug Papa. I wish I could hug him, but Papa is not here….”
I am very grateful to everyone who has written to me and these are hard days; I read and cry, cry and read, but I am thankful for all of your support, for all of the beautiful messages I received about Misha, and for your love for him.
It’s impossible to explain who Misha was for us: for his family, for me, and for the kids. We always laughed and talked with him, and we had an incredible connection and a deep love. We thought we could overcome all difficulties as soon as we were together. It was sparkling happiness to be with Misha. His love, kindness, humor warmed us all and brought out the best in us.
I truly believed, truly never doubted even for a moment, that we will save him. We all believed it… These last few months, when we launched the campaign, were very special for Misha. Things were very hard for him; he was struggling physically, and he couldn’t breathe, couldn’t eat, and couldn’t do the things he used to do. His body refused. But, somehow, his spirit didn’t notice, and not only did he never complain, but he found the strength to support us and smile and feel joy with us. All of the love that he felt through that campaign made him so happy. We read your messages, your supportive words. We reconnected with people from his life who he had not spoken with in many years, and we met new people who were just extraordinary. He didn’t have time to express what we felt from all of you, and how much you supported us. He thought he would have more time.
I cannot say it as well as he could , but all of you should know: you made him so happy in his last days, so grateful, and so feeling the fullness of life and understanding that there is incredible kindness and love in this world. It EXISTS!
Yesterday the sixth of May at 17:06 Misha passed away. Doctors cannot do anything to save his life. He passed away in piece and didn’t struggle. Both me and kids had time to come to him and say good bye.
He was in medical coma but hope could hear we were with him. It’s a big tragedy it happened so abruptly and at the point when we almost saved his life…. He never lost his good mood and good sense of humour. We love him so much , both me and the kids and cannot believe it happened… I never had so deep connection with anybody and now its a silence on the other end of the line….
Today we called our transplant coordinator to report that Misha is using more oxygen while at effort. They insisted that we should come to the emergency room for check. In the emergency room they did some basic checks: temperature, blood pressure, chest X-ray, blood analysis. Misha will be admitted to the hospital for the further evaluation.
This is the answer we have got on Tuesday this week. We have been waiting for this ever since we arrived to Pittsburgh and our eagerness and excitement rose sky high by the date of the doctors consilium. When we got it we were shocked as we didn’t understand what to think: from one side “approved” is not “rejected”, but from another side they didn’t put Mikhael on the donors list and it means that they will not look for the donor and the date of operation is still a shadow in the fog. Mikhael had a sudden drop in his oxygen consumption, he is on 5-6 liters/min during the rest and on 15 liters/min when standing up and walking. 15 is a maximum we could have at home… So we were kind of reassured that with such high oxygen numbers , we for sure should be getting on the donors list.
Doctors had a different opinion. Their verdict was: too low thrombocytes and too low prealbumin. Thrombocytes – they knew from the very beginning it’s not much we can do about it. Prealbumin is a protein made in your liver. Prealbumin helps carry thyroid hormones and vitamin A through your bloodstream. It also helps regulate how your body uses energy. If your prealbumin levels are lower than normal, it may be a sign of malnutrition.Misha is not a good eater and they will not operate him before his prealbumin levels will rise. We will be doing weekly blood checkes both for thrombocytes and prealbumin and will be waiting till the number will satisfy the doctors.
The confirmation from the medical committee came today – I am officially approved for transplants. There are still a couple of manageable things to turn around to get on the donor search list.
Somehow they saw through my tactics of putting multiple levels of clothing and keeping my shoes and clothes on while measuring weight in the hospital. They started to measure my nutrition level directly through proteins in my blood. So smart!
Now to get from approved status to listed I need to prove that I eat a lot through consistent blood work results. Luckily the solution is not complex. I have to start eating sweets. This is a reasonable challenge!
April 6 was our first day at UPMC. It started at 8am sharp, included 4 meetings and ended with 30 tubes of blood drawn from me and a 3-hour nap. The last one was particularly good.
—Below are some medical details that could scare some. Sorry for that! —
We met Pablo Sanchez, who is the head of the Division for Lung Transplantation and Lung Failure at UPMC. He impressed me by his calmness, clear thinking and pragmatic approach. He was reassuring and said that even though my case was not particularly easy, they had experience in dealing with all of the envisaged obstacles. UPMC will spend 95% of the time preparing the surgery, and only 5% doing it. Putting it simply for us, he explained: “In the end we will open you up, look at your lungs and your heart and proceed as need be.” Simple and clear enough for me. He also mentioned that I was a good candidate for the lung transplant because of my young age and relatively good physical condition. The best way to prepare for me is to remain physically active and eat a lot. Finally, he reminded us that the lung transplant was the easy step of a long treatment process.
We are soon to meet Dr. Paul Szabolcs, the hematologist and the sponsor of the clinical trial. His name is more difficult to spell than you might think. He is the one who needs to make three miracles happen against the disbelief of his European colleagues:
1) Immediately post lung transplant – find the right balance between risk of lung rejection and risk of being too aggressive to my already weak bone marrow.
2) Once I am back on my feet with the new lungs – perform a bone marrow transplant with a donor who is only partially matched, BUT whose lungs I already accepted.
3) As a bonus – try getting me off the immunosuppressant therapy that usual transplant patients have for life. Big cost saving! : )
Dr. Paul Szabolcs has already done it, and not once. I am looking forward to helping him prove to the whole world that he is right again.