Fraser's Adventures in Poland...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Poland

Postby fraser » Wed Mar 24, 2010 8:52 am

Hi Openmind,

So nice to hear from you!!! I'm the same, so many memories and images in my head. I felt very emotional leaving. I think mainly because we were with people feeling just like us. Just loved meeting and spending time with you both - you're a great couple, and wonderful people. You both have such a positive outlook on life - just loved our many talks (they really helped me through it).

I am so sorry to hear about your difficulties on the way home. About the blood in your urine - could any of it be caused by the blood thinning medication? We looked up the side effects, and I think that was one of the possible side effects. Of course if it was a bladder infection, that would probably explain it.

That is so sweet of you to paint us a picture. We will always cherish it. I'll
be posting later today, just have a few more thoughts about Poland I want to express - it really was an adventure!

I'll be in-touch soon - hope you continue to feeling better,
Fraser
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Postby fraser » Wed Mar 24, 2010 1:28 pm

Well here we are back at home. So hard to believe we're back - amazing what you can do in a week. It really was a very emotional week, so I'm not only tired from the jet lag, but just the whole experience in general.

My husband was a bit concerned that maybe I painted a picture of Poland that was too idyllic. I thought about it myself, because when the dizziness, foot drop, kicked in I wondered if I mislead everyone and should have held back a bit. But then I thought, why should I?? We did have 2 days of bliss, absolute heaven, so really I was only trying to convey exactly what we were feeling. The following 2 days weren't as great and then that awful superstitious side takes over, where you think "it's because I spoke too soon!". Isn't that an awful feeling, when you think you've brought the downturn upon yourself - so crazy. So anyway, that's what was going through my head in Poland, but feeling entirely optimistic again.

My husband discovered a massive deep purple bruise on his stomach where he's been injecting the blood thinning medication. We kind of freaked out (can cause internal bleeding), but then called his doctor and he said it was probably because he hit a blood vessel, but to keep taking it. The other thing that we discovered, after looking it up online, was that the dizziness and stomach upset he was experiencing could have been caused by the medication. Felt better reading that. Can't wait until the shots are over on Fri. You do have to take aspirin for life, but who cares.

Another huge improvement has been sleep. My husband is really sleeping well, usually not waking up at all during the night. It was a HUGE problem, and really impacted the MS. So..you open up the veins, and you can sleep!! Man, do these blocked veins cause a lot of havoc in the body.

I just want to add, that at first I was scared of the stents. Then I was happy about the stent, when I saw the difference in my husband. Then I was scared again, because he had a few days that were not great. I just want to say that I think I've finally made peace with the stent! I've thought it over a lot, and I now know that whatever happens I am 100% convinced we did the right thing. Going into this, my husband's EDSS score was only 2.5, so I kept thinking if you're in the early days of MS and in pretty good shape, maybe you don't want to risk it with the treatment. In the end, who knows where you'll be in 1 year, 2 years - so here we have a chance to hit this head on. Do you wait it out in fear for the future, or do you grab your chance. That's what this felt like...so even if there are complications down the road, because not everything was known about these stents or of their longevity - my husband (and I) "grabbed life by the horns". It really is a very philosophical time in our lives.

I'll keep you posted on his recovery. Feeling extremely happy today - my husband feels amazing, which fills me with joy.

Fraser
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Postby annad » Wed Mar 24, 2010 2:01 pm

Fraser,
you captured the feelings so many of us have or are going to have when dealing with this new journey.
I have looked forward to your postings!
Thank you for sharing and giving us some insight.
All the best to you and your husband!
a
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Postby esta » Wed Mar 24, 2010 2:37 pm

fraser
i love your heartfelt honesty and soul bearing. we are all on or will be on the same journey, and i sincerely appreciate all that you write.. :D .
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Postby bluesky63 » Wed Mar 24, 2010 5:18 pm

I just wanted to thank you so much for your detailed, wonderful posts here. I hope that you continue to see improvements. Living your life now -- not waiting till some unknowable future -- sounds like a beautiful philosophy for your life together. :-)
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After Poland...

Postby fraser » Fri Mar 26, 2010 6:24 am

Well, my husband woke up with a headache - I actually cried. In my mind I was thinking (after the procedure)...could this be the end of his headaches?? I feel let down, because for some reason the headache issue seemed so strongly tied to the blockage. When the doctor inserted the stent his four hour headache disappeared. So you can't help wondering - why a headache now? I have to not worry so much about it.

I think when you start off with several great days after the procedure, it can be a bit dangerous. When it's gradual you don't have these huge expectations, you just take one day at a time. I have to get in that frame of mind, and still look at our journey as a slow, steady recovery and try to not focus on the perfect days we had. Also, once Poland is over with, it doesn't mean that everything is going to be smooth and there won't be challenges.

On the up note, today is the last day of injections, so the bruising will not be an issue. He also said that even with the headache he felt really normal and not MSy. His eye prescription has really jumped so feels as though it might be related to eye strain. Hopefully.

Just wondering if anyone who has had the stenting still kept the inclined bed therapy going? First thing my husband said today was he wanted to incline the bed again (had to take it down for the guests!).

I guess that's all for now. Thank you again for all your lovely comments - so supportive and needed right now.

Fraser
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Postby Vhoenecke » Fri Mar 26, 2010 6:57 am

Hi Fraser,

Erica Slovakia did continue with Incline but she had to stop later for other reasons. Spina Bifida and many more troubles. You may want to pm her.

Val
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Poland

Postby fraser » Mon Mar 29, 2010 11:38 am

Husband off to work - first day back after procedure. He felt good leaving today. Clear head after sleeping well last night. Yesterday was not a great day - a little dizzy, brain foggy, but much better today. I think it will take time and patience before we know for sure which improvements will be permanent. So much better overall - greater sense of wellbeing. He called a little while ago, and is having a good day. So much more hope now.

Just a question. In Poland we were given these blood thinning drugs: Fraxiparine (injection), Areplex & Polprazol. Does anyone know if Areplex or Polprazol are also known as coumadin? I've heard there can be big side effects so wondering if in Europe/North American coumadin is the name used. Also was reading that when on these drugs you should have your blood monitored weekly/monthly to ascertain your PT/INR numbers - this was not mentioned in Poland. Does anyone have any insight into this? Maybe others got this info in Poland, be we somehow didn't.

Thanks so much, Fraser
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Postby sunlounger » Mon Mar 29, 2010 12:28 pm

Hi Frazer,

I have heard they are using newer stents now in Poland,
Do you know anything more about this ?

Thanks
You might find that you’re not lost
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Postby LisaAnn » Mon Mar 29, 2010 3:21 pm

Hello Fraser,
I have not had angioplasty but within three weeks of IBT most of my headaches were gone. No more headaches when waking up and sleeping much more soundly. Try it!
Lisa
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Postby berriesarenice » Mon Mar 29, 2010 3:44 pm

Fraser, you are right that Coumadin (or Warfarin) required blood tests to monitor INR.
Areplex is the same active ingredients as plavix, which does not require blood tests as far as I know.

Hope that is helpful.
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Postby ErikaSlovakia » Tue Mar 30, 2010 1:37 am

Vhoenecke wrote:Hi Fraser,

Erica Slovakia did continue with Incline but she had to stop later for other reasons. Spina Bifida and many more troubles. You may want to pm her.

Val

Hi, I just have found this post today. Yes, I had to stop with IBT after 3 months because my spina bifida was really painful and I was waking up like broke.
I was flat for more than 2 months. I bought new bed with a new good quality mattress. I sleep incline again - I started I think 5 days ago but only 9 cm/3,5 inches. I only feel very light back pain in the middle of my back - not spina bifida in the morning for very short time. Last time it went away after couple of days. I do not think I will incline it more because of my spina bifida.
My headache during the day became better during last month even I was flat but do not forget I got a sten last November so I am not good test person for IBT.
Erika
I feel comfortable with my 9 cm.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Katie41 » Tue Mar 30, 2010 3:53 am

Hi Fraser,

Your experience and emotions in Poland are identical to mine! I'll write more on that later. I do have a question for you, though.

Yesterday, my daughter had two stents on one side and ballooning on the other. Upon return to hotel, today, have the same questions re Areplex and Polprazol. Did you get the full two months supply of either, here in Poland? According to the internet sites I could find, Polprazol is not sold in the US. The main ingredient seems to be omeprazole which is primarily in Prilosec. I'm trying to get more info from the hospital about it. Will pass it on when I get it.

Miss you and your husband!
Thanks,
Katie41
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Postby Katie41 » Tue Mar 30, 2010 4:21 am

Good Morning,

Well, well. I quickly found out the info by continuing my internet search, looking under the English sites. Since the drug is used in Poland, many of the sites were in Polish, so it was easy to find the few English ones. Surprise, surprise! The answer was in Duncan's (Dunkempt) internet blog. Polprazol is for preventing stomach aches from the blood thinner.

For those of you in Poland or coming to Poland you can purchase the meds at the pharmacy across the street in back of the hotel. Duncan's four meds were 330 zloty, his brother's were 400 (about $130). The difference is due to the pharmacy being out of one of them and used a brand name one instead. We're off to purchase them.

Katie41
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Postby Inge67 » Tue Mar 30, 2010 7:04 am

Wow.
Fraser, thank you so much for your posts. I was in tears behind my laptop! Thank you for wording it all so well.

I am going to Poland next month (27 April) and I am having doubts on the one hand and I am exited on the other. It's a rollercoaster of emotions, and I am not even there yet! I can now imagine a little better how things will go there. Thanks also for the practical side of your posts.

Hopefully all things will keep going well!

Inge
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