Ivan rocking it since 2003

[Olga]

Thoracoscopic is not an option for the people with few previous lung surgeries as there is a lot of scarring between the lung and the pleura, they won't be able to get there trough. I am also not sure about the mini-thoracotomy if it is possible.

[Olga]

Dr.Littrup just called and he is confident he can completely ablate this nodule, so the life has just got easier. We have not met with the local docs yet and have not heard from Dr.Rolle but he has already told me before that at this point we should try to go without the surgeries to preserve the lungs.

According to him, the failure of the ablation was already clearly visible on the scan done a year ago. That scan was done with the contrast and he confirmed that it is necessary to have the scans done with the contrast when the completeness of the ablation is under surveillance. 2 last scans were done with no contrast and it seems that either our local ablation doc did not request them to be done with the contrast or the radiology disregarded that request, I am going to get to the bottom of that for sure - although there might be no rules set in stone yet per the post procedural scanning, the recommendations are already known and if we do not complain, they are not going to be implemented.

[Bonni Hess]

Dear Olga,
Thank you for the update with the very encouraging news from Dr. Littrup. I will be interested to hear the local doctors assessment of the situation and their treatment reccommendation, and will look forward to your update regarding that once you have met with them. It is certainly very frustrating and inexcusable that the proper post cryo scans with contrast were not done for the entire past year, and I agree that this unacceptable situation needs to be brought to the attention of someone in charge there, and the necessary changes made so that this doesn't happen again to Ivan or to another ablation patient and risk undetected growth from a failed ablation. Take care Olga and give Ivan a special hug from me and my very best wishes.
With special caring thoughts, healing wishes for Ivan, and continued Hope,
Bonni

[Olga]

It seems that we have a problem. We have received a recommendation from Dr.Rolle that he support the ablation and we should do it ASAP, but Barb says that Dr.Littrup is fully booked for the next 5 weeks. I am wondering if Dr.Rolle would still support the cryo if he knew that the earliest time it could be done is on Nov.20th...We are on the cancellation list thought.

The local ablation doc has still not contacted us with their local recommendations, he and Ivan's local supervising thoracic surgeon had to meet to discuss this case after he is back on Tue from somewhere, nothing so far.

[Olga]

The update:
1. Good news, Barb found a space to fit Ivan in next week on Wed., Oct.31.

2. So-so news - we still haven't heard anything from our local docs. I am not bugging them at all so may be this is how it moves when no one calls 5 times a day? We generally already decided to have the ablation in Detroit by Dr.Littrup as it is going to be a very complex one and we need all the advantages to be on our side - he is the most experienced cryo doc with the newest equipment. I am not saying that Dr.Liu is not good, but we just do not have any contingency now so we'd go for a best shot at it in our attempt to avoid the emergency surgery.

Can anyone who's recently been there for ablation remind me when (in how many days after the ablation procedure day) they schedule the check up X-Ray before you are free to go home? Thinking of booking flights but do not know what would be the return date.

[mikko]

Jussi´s second cryablation was on Wednesday afternoon. X-Ray next Monday. Flight back to Finland on Tuesday.
So glad to hear that Barb found a new date

[Ivan]

Some more information on the decision process that got us here. The local team in Vancouver said that they do not feel confident about being able to ablate this nodule. They actually offered a VATS resection, but I immediately thought that it's not going to work.

In 2005, one month after my first thoracotomy in Germany, I had a pneumothorax. A VATS procedure was attempted to close the persistent air leak. Well, due to the vast amount of scarring they failed, and ended up doing another thoracotomy. Just a disaster. Here, the lung is after two thoracotomies and I also remember Dr. Rolle mentioning that the scarring was particularly bad on the left side.

I called Dr. Rolle and spoke with him on the phone to confirm. He immediately confirmed my hunch, saying that VATS is "impossible". He went on to say that even a thoracotomy in this location would be very difficult. How irresponsible of them to offer this option again without consulting Dr. Rolle. I'm glad I did - it removed any doubts about what the best option is.

So I just finished my ablation. A bit more pain this time, but it's way down now. Dr. Littrup was happy with how it went. I am staying overnight as a precaution, and leaving the hospital tomorrow.

[mikko]

Congratulations for a successful cryoablation! Enjoy Detroit (I am now a Motown music fan). At what hotel are you staying?

[Olga]

thanks. we hope that the ablation was a success but as we know now, it is only remains seen as the time goes. we are staying at the Holiday Inn express downtown, it is an older hotel but I find it to be a very good value at the special rates negotiated by the DMC instead of the patients accommodation building they had before and that is now demolished, in some sense it is even better with the free breakfast (with the limited selection but it gets us going) and the free shuttle within 3 miles drop off and pick up, sofar we used it every day twice. And a gym. Also there are more restaurants close by and some nice places to walk to. Ivan feels very good although he is def. weaker than usually. Barb said that Dr.Littrup fell ill I hope nothing serious, but we got lucky as it happened the next day the ablation was done.

[Ivan]

This is definitely the most difficult ablation I've ever had to do. Right after I woke up with fairly significant pain. I would say up to 7/10, but it diminished fairly quickly down to 5/10. I think part of it has to do with the fact that three cryo probes (of the largest size) were used.

My previous ablation was a 1 cm nodule, compared to this 2.6 cm nodule. I honestly felt like I could go for a run the next day. I don't feel anywhere near as well now, and it's been 2 days already. There is still notable pain (maybe 4/10 on deep breaths), and my overall level of energy is low. My body feels achy in general - as if I have a cold - and my lung makes creaky-scratchy noises. That's the lung rubbing against pleura in a damaged state, I believe.

Dr. Littrup thought that there is a >90% chance that this was a complete ablation. This would be a great success, since this nodule was left untreated for so long. Essentially, it was a 2 cm nodule which was left untreated for a year because we thought that it was already dead.

I think that I could have spotted the incomplete ablation a bit earlier had I tried harder. I should have learned not to rely on our radiologists as they are truly sad excuses for a human being. They literally get paid for trying to kill me over and over again

[Bonni Hess]

Dear Ivan and Olga,
I'm sorry to have been out of touch the past two weeks and unable to send my good wishes for the Cryo procedure on Wednesday, but I was on a Caribbean cruise and then got stranded on the east coast on my return flight to Seattle by Hurricane Sandy. Based on the relatively large size and concerning location of the lung met, it certainly seems that you made the best treatment decision as opposed to a VATS resection or thoracotomy, and I am so grateful that you were able to get the procedure scheduled so quickly and that Dr. Littrup was able to successfully ablate it. I am so sorry for all of your post-op pain and weakness Ivan, but Hope that it will quickly resolve and that you will have a good and full recovery. Brittany had a very difficult recovery following her last Cryo with Dr. Littrup in 2009 and experienced significant referred shoulder pain as well as chest pain associated with taking deep breaths. It took her awhile to fully recover her energy. Try to be patient and give yourself time to heal as your body has been through a lot even though Cryo is a minimally invasive procedure. I am holding very tight to Hope that this ablation was very successful in completely destroying the met, and that you will very soon be able to resume your very active Lifestyle. In the meantime, please take care, give yourself a gentle hug from me, enjoy your time in Detroit, tell Dr. Littrup and Barb "HELLO " from the Hesses, and travel safe on your return flight to Vancouver.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[MarietjievdMerwe]

Ivan,

So glad to hear that everything went well, under the circumstances. Every procedure is painfull, no matter what. If they stuff things into your body, it hurts.

Hope you will feel 100% very soon and will be able to excercise again.

Thanks for letting us know how you are doing. This is again very inspirational to a huge extent.

Keep well and get better soon.

Regards.

[Ivan]

I arrived home last night. Sleeping on a nice mattress (and a good pillow) is much better Feeling OK, planning to go to the gym later today for a light workout.

[Bonni Hess]

Welcome Home and thank you for the good news update Ivan You are making an amazing recovery to be able to have already flown Home and feeling good enough to go to the gym less than a week after your cryo! It is of course always better to be in the comfort of your own Home and able to rest and recover in your own bed When Brittany had her ablations ( both her Cryo and RFA) she was not allowed to fly for a week due to the risk of developing a potentially fatal pneumothroax in the air if there was a sudden loss of altitude by the plane, so we took a very long and uncomfortable train ride back to Seattle because she wanted to return Home as soon as possible! Take care and take it easy as you recover.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[mikko]

Great! Welcome back home. Is Dr. Littrup also OK? When are you going to have a new CT?