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This is a blog about my journey to treat CIDP (chronic inflammatory demyelinating polyneuropathy) with an autologous hematopoietic stem cell transplant (HSCT) at Lund University Hospital.

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1st anniversary and closing the blog

1st anniversary and closing the blog


Today May 17th it´s exactly one year since I got back my stem cells and my immune system could restart from the beginning. I can feel horrified by the thought that I even hesitated to take this treatment and intsted optioning for trying the MabThera treatment, as if it had functioned it would  not have been curative.

Now all medications (protective for infections)  are finished  since 1/2 years, all vaccinations completed, all follow-ups has been completed at both the hematologist when my immune system is completely regenerated and the neurologist whre my neurology is fully restored - even the tendon reflexe  came back. I have no symptoms anymore and is fully recovered!

Last week I ran the Lund race, one could choose between 5 and 10 km and I took of cource  the 10 km. It was a beautiful day, the sun was shining and there were lots of people on the street who cheered us  runners. The race was a pleasure because it was not even hard! And my time was much better than I expected - got 53.30 min (compared to the last time I ran the Lund race for six years ago when I ran the 51.50, but I am on the other 6 are older so it was not so bad!) . I had hoped I would run in 60 minutes or less.

I exercises with both outdoor jogging and weight training at the gym and is probably in better shape than have been ever!. And today my weight is 10 kg more than when I was discharged from hospital at the end of May last year. And it's probably mostly muscle.

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1-årsdagen och avslut på bloggen

Idag 17 maj är det exakt 1 år sedan jag fick tillbaka mina stamceller och mitt immunsystem fick starta om från början. Jag kan fasa vid tanken på att jag ens tvekade till denna behandling och i stället hade alternativet med att testa Mabthera-behandling, som om den hade fungerat inte varit botande.

Nu är alla skyddande mediciner avslutade sen 1/2 år tillbaka, alla vaccinationer avklarade, all uppföljning har avslutats både på hematologen då immunsystemet är helt regenererat liksom på neurologen då neurologin är helt återställd - t.o.m senreflexerna kom tillbaka. Jag  har inga symptom längre och är friskförklarad!

Förra veckan sprang jag Lundaloppet, man kunde välja 1/2 resp 1 mil och jag tog förstås en mil. Det var en härligt dag, solen sken och det var massor av folk på stan som hejade på löparna. Loppet var ett rent nöje för det var inte ens jobbigt! Och tiden blev klart bättre än jag tänkt mig - fick 53.30 min (att jämföra med sist jag sprang Lundaloppet för 6 års sen då jag sprang på 51.50, men jag är ju å andra sidan 6 är äldre så det var ju inte så tokigt!). Jag hade trott jag skulle springa på  60 min eller sämre.

Tränar både löpning utomhus och styrketräning på gymmet och är nog i bättre form än jag var innan jag blev sjuk. Och idag väger jag 10 kg mer än när jag skrevs ut från sjukhuset i slutet av maj förra året. Och det är nog huvudsakligen muskler.

 

 

 



7,5 months

I participated in the San Silvestre city run in Las Palmas on New Years Eve. 6 km and  6500 runners - and I run past many. Fantastic in all aspects! Could definitely not have believed  this last spring!

http://www.youtube.com/watch?v=a3hyGmnf3Mg

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7,5 månader

Sprang stadsloppet San Silvestre i Las Palmas de Gran Canaria på nyårsafton. 6 km  - och jag sprang om många av de 6000 löparna. Fantastiskt på all sätt och vis! Kunde definitivt inte tro det i våras!

 

 

6 months

Worked full-time for 3 months - well actually more than full-time because I have had more on-calls during weekends than normal (when you have one weekend on call per month  - in addition to the 40-hour week) . But now I have had two on-calls during weekends during both October and November, to replace colleagues who

have become ill or injured . So  concerning  my working capacity  there is really nothing to complain about!

The vaccination program is progressing intensively, I´m fully vaccinated against pneumococcus . In November I had a  tough program : vaccination against influenza, hepatitis A and B , haemophilus , diphtheria, tetanus and polio. Vaccination against measles and chickenpox are live virus and can be carried out only two years after stem cell transplant. But as anesthesiologists you may encounter patients with chickenpox and measles, so I asked if they could check my titers. And it turnde out that I am fully protected against these infections.

The samplings have now been reduced to once a month. It turned out that my immune system is fully normalized in ALL measurable values
​​. The lymphocytes is 1,0 (normal value >0,96) and T-lymfocyterna/CD4 is  440 ( normal value >370) . It´s the latter that are most interesting to follow as they protect against so-called opportunistic infections like herpes and pneumocystis (affecting HIV patients when CD4 drops below the "AIDS - level 0.2). In September, CD4 was  140 and now as I said 440 meaning that I could it stop with atovaquone (Wellvone) as prophylaxis against pneumocystis and in a few weeks I'll stop with Valaciclovir for herpes. After that I have no medication left .

I have not been susceptible to infections whether at work, where I in the past few weeks have been in ICU where patients have various unusual infections, or in my private life. I was for example in Istanbul  for five days a month ago . There I was really in the crowds as in trams and at markets. I also ate everything, even  green salad with no problems. (I had as a precaution taken a gammaglobuline vaccination against Hepatitis A).

I have since I started working in September gained the full  muscle force, but I noticed after a while that I automatically begin to take all steps in the stairs with 2 steps at a time  going up (even up to the 6th floor at work ) . But the last few weeks I have even automatically, at least in the stairs at home, started taking two steps at a time even down!

When I did  my last jogging tour (about 7 km) it found it particularly pleasant and enjoyable all the time. I listened to good music and let my  thoughts flow wildly. When I started running last summer, it was tedious and far from pleasant and I had to stop several times the first times. Eventually I did not have to stop but it was still not enjoyable. In September, I began to run at the St. Hans Hills , a tough running up and down a lot of times (one turn in the  running competetion St. Hans Extreme http://she.lundsok.se/backarna/) . Although it was easier uphill than ever (even before I got sick !)  it wasn´t really enjoyable because of the tuff slopes . But  my last running was as I said this on a relatively smooth terrain and therefore for the first time really enjoyable.

Some interesting fact is that my neurologist wanted me to have a new neurography to obtain an objective measure of my improvement. It showed an improvement compared to the one I made in January but was not as good as the first one I did in June 2 years ago - when I was not at all well! So it seems that it doesn´t at all reflect reality, just like that I still miss tendon reflexes in the arms and legs!

I have not deliberately tried to raise the resistance at my gym (unless it started to feel it´s too easy), but strived to maintain what I  have achieved . But a small upward adjustment has been achieved:


Quadriceps , (been sensitive to deterioration) . In April I was down to 25 kg 5 times, at the end of August 60 kg 13 times - and now 70 kg of 13 times .

 

Hamstrings , gluteus (back legs ) - 40 kg in April to 10 times , the end of August 65 kg of 10 times - and now 75 kg of 13 times .

Gluteus and hamstrings - 56 kg 17 times in April against 164 kg 17 times in late August - and now 188 kg 17 times ! (Those who have been most susceptible to deterioration)

 

Biceps - 45kg 6 times in April vs 64 kg 10 times in late August - and now 71 kg 13 times . (Also susceptible to deterioration – I could feel that the I ran out of power earlier).

 

Deltoids - 30 kg 2 times in April vs 46 kg 12 times in late August - and now 52 kg 13 times . (Most sensitive among arm exercises for deterioration)

 

Fri weight rerversed biceps - 2,5 kg in April against 6.5 kg of 13 times at the end of August - and 10 kg of 13 times now.

I am convinced that a large part of my quick recovery is all the time when I was sick I  a have been so physically active, bycyckling  my 2.5 kilometers (one way) to work each day , gone to the gym 2-3 times / week . And that during all the 20 days I was hospitalized I both took 1 hour of fast walking (I never ever took the lift  for the 3 floors but took the stairs up and down ) and did  2 exercises on the exercise bike and some other gymnastics, every day! There's also science showing that physical exercise reduces side effects of chemotherapy .

So how has my body changed? Well aside from that I do not have any symptoms left of the neuropathy I'm probably in better physical shape than I've ever been (even before I got sick...), stronger than ever. No more mucle tenderness after a long running sessions. I have gotten more rich and stiff hair (better quality than before ) , more hair on chest o belly, hairy legs ...

Besides, I must say thanks to my neurologist  Dr. My Bergkvist because she dared to suggest this amazing treatment at an early stage (where I still worked full time without and sick leave and could carry out hikes in the Australian outback ) where I have not gained any permanent damage (but neurography showing signs of incipient impact on the axons ) and I am so glad I chose the proposal of two possible options !

Then I had to, as usual, to finish with a flower image from the garden now, in December, where we have flowering species all year round in our garden. So here's the winter jasmine:

 

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