Almost a month has passed since Misha’s death

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!

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!

….

Dear family, dear friends,

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….

Iryna.

Mikhael is using more oxygen while at effort

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A message from Iryna:

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.

#saveMikhaelKrotov

Approved but not listed

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Approved but not listed.

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.

A letter from Mikhael: he is officially approved for transplants!

Dear family, dear friends,


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!


Sweets and love!

Misha

First meeting at UPMC

Dear family, dear friends, hello again!

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.

Misha

Appointments scheduled for April 6; still in search for an apartment in Pittsburgh!

Mikhael has got an appointment at UPMC on April 6th! After tests taken he will be listed in the national transplants queue. We don’t know if Mikhael will have to be waiting takes days or weeks but hope for the best! Kids are happy being united but it is still quite tiring with acclimatization… Less and less days are left while we have to find an apartment: wheelchair friendly and preferably furnished with 3 bedrooms. So far sounds (again) impossible but… But we believe and would be grateful for any tips!

And here is a nice story about Mira and Tor’s trip to Pittsburgh last weekend. As some of you may know, a medical plane was not allowing many people on board and only Mikhael, Iryna and Freia Alexandra landed in Pittsburg at first. But last weekend all the family reunited as Mira and Tor (8 and 6 years old) crossed Atlantic and reached Pittsburg! All by themselves! As Mira said: food was good, cartoons were a bit for babies but ok, and she enjoyed an adventure! Tor was not as happy, but he followed his big sister and together they managed it all.

But this is not the end of the story. Actually, they were special passengers on board. Neighbor of Mikhael’s step father and friend is an AirFrance pilot. He contacted his friend who was the pilot on Mira and Tor’s flight and asked for special attention to the two small children travelling alone. He did. Here is the message about their interaction that we recently received.

Message from the captain from their flight:” We took good care of the children. Too cute. The little one is my daughter’s age. I spoke with her on the plane. She liked the flight, the movies, the food. I showed her lots of photos of my daughter. We talked about skiing, Mouans-Sartoux, Norway… I hope that her dad will recover and that would be a beautiful thing.Their life is made up of little gifts for now, I hope they get their ultimate gift soon. Good luck to all of you.”

Mira and Tor have arrived in Pittsburgh

The two older kids, Mira and Tor, have joined the rest of the family in Pittsburgh.

(Great) friends of Mikhael and Irina had prepared the apartment to facilitate their arrival: ready meals, shopping done, games for children…

Thank you for your many comments and messages of support! Count on us to continue to keep you informed of what happens next.

Next step for Mikhael: medical exams and appointments. May the force be with him!