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Message |
iLLios
Member
Username: frank_g
Post Number: 358
Registered: 05-2008
| | Posted on Thursday, August 28, 2008 - 04:46 am: | 
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Hello!
I start this new thread to share my experiences regarding my Rehab in the Clinic Fallingbostel with you. I am here from August 25th to september 15th - maybe one or two weeks more.
Here are some pictures I took:
View from my little balcony:
My room:
My room 2:
My bathroom:
Bathroom 2:
The wards corridor. At the end of this corridor there is the wards own fitness-room:
Yesterday my Trainingsprogram started.
I do have everyday Ergometer- and dumbbell training.
Physiotherapy.
Sometimes Massages, red-light treatment (infrared), psychological talks and art therapy.
And walking around with the walker as much as I am able to do without overstraining me.
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LadyDi
Member
Username: ladydi
Post Number: 961
Registered: 03-2008
| | Posted on Thursday, August 28, 2008 - 08:20 am: |
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Wow! Nice place, Frank! A beautiful view from your window! Hope they are helping you regain your strength and to feel better.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
We are all faced with great opportunities brilliantly disguised as impossible situations. |
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CiscoKidney07
Member
Username: gregg
Post Number: 1356
Registered: 03-2008
| | Posted on Thursday, August 28, 2008 - 09:46 am: |
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Yeah, bud. Beautiful view, but nothing like feeling better. We are praying for you.
| Still nuttier than a squirrel turd |
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Karen R.
Member
Username: relivkaren
Post Number: 1614
Registered: 07-2007
| | Posted on Thursday, August 28, 2008 - 01:14 pm: |
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Frank:
Great place! It is so clean and shiny!! Rehab will make you strong and ready for your transplant. I am glad that you have such a great place to go to. Keep up the good work!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 359
Registered: 05-2008
| | Posted on Thursday, August 28, 2008 - 01:51 pm: |
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Today i felt better!
Walked the first time stairs with my physiotherapist and she was impressed what I was able to do the first time.
Walked 1 floor upsatirsa and two floors down and through th mainhall out of the house.
Here tow pictures of pneumology wards own training room:
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Hostess Risa
Member
Username: risa
Post Number: 6125
Registered: 05-2003
| | Posted on Thursday, August 28, 2008 - 05:57 pm: |
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Beautiful pictures. I love all the trees. What a great looking place to stay. I hope the food is good too.
The machines look familiar but are more state of the art.
What kind of art therapy? Massage with infrared?
Curious what kind of flooring is in the rooms?
Now I can picture you working out. GO GO Frank GO GO!
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iLLios
Member
Username: frank_g
Post Number: 361
Registered: 05-2008
| | Posted on Friday, August 29, 2008 - 02:03 am: |
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Yes, it's an impressive look sitting on the ergometer and watching this green "wallpaper"
The whole ward is 1 year old. And so are the machines :-)
They offer drawing and painting with acryl and aquerell colours in the art-therapy.
Massage without infrared.
Infrared is seperated from all and so it does not makes much sense to me.
The floor is the same in all rooms on this ward - PVC.
I do my best Risa :-)
Today, in a view minutes, I have massage.
At 1pm Ergometertraining and muscletraining.
At 4 pm Physiotherapy.
This morning I do not feel well.
My FEV1 dropped to 0,78 Liter and my lungs feel as if they are full with mucus.
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iLLios
Member
Username: frank_g
Post Number: 362
Registered: 05-2008
| | Posted on Friday, August 29, 2008 - 02:10 am: |
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I canceled the massage, do not feel well and I am afraid that it will be too intense for me.
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iLLios
Member
Username: frank_g
Post Number: 363
Registered: 05-2008
| | Posted on Friday, August 29, 2008 - 02:34 am: |
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I forgot: The food is ok as I am not a vegetarian, I can say so.
You get twice a day a hot meal. At noon and in the evening.
It's not as tasty as I am used to, but it is OK for hospital food.
Yesterday we had for lunch as a starter carrott salad, entree was mulligan and as dessert mousse au chocolate. *yumyum*
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Hostess Risa
Member
Username: risa
Post Number: 6130
Registered: 05-2003
| | Posted on Friday, August 29, 2008 - 07:30 am: |
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I am sorry you are not feeling well. Do they have chest therapy for you so you can help clear out the mucus. It is called CPT here in the USA stands for Chest Physiotherapy.
About the Wallpaper, That certainly looks real to me. IT is simply Gorgeous. I know you are kidding when you refer to wallpaper.
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papillonbleu
Member
Username: papillonbleu
Post Number: 841
Registered: 10-2007
| | Posted on Friday, August 29, 2008 - 08:01 am: |
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Dear Frank,
I hope that you may start to feel better soon. Your rehab center really looks like a very nice place. I love all the scenic views it provides. I hope that it can help to keep you strong and as healthy as possible until you can get retransplanted. Best of wishes.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 364
Registered: 05-2008
| | Posted on Friday, August 29, 2008 - 02:08 pm: |
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OK, this evening I feel better. My FEV1 raised to 0,82L today and i walked, regardlessly of my FEV1 340m, was sitting 20min. on the ergometer, did bizeps and trizeps dumbbell training, leg-press and rowing.
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Heather
Member
Username: heather
Post Number: 1198
Registered: 05-2003
| | Posted on Friday, August 29, 2008 - 02:36 pm: |
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Very nice looking place, Frank. As Karen said..nice and shiny clean and carpet, too? I did notice the camera bag on the bed..haha. Glad you remembered that. Also..what's with the sign above the fire extinguisher? the one with the little green guy running? Is that an exit sign? At first thought...a restroom sign
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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iLLios
Member
Username: frank_g
Post Number: 365
Registered: 05-2008
| | Posted on Saturday, August 30, 2008 - 10:45 am: |
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Hello Heather,
yes, they keep it clean every day :-)
It's a very hygienic ward - it must be! Transplanted people running around this place. That also means no carpets - only PVC.
Yes, you are right, that's my old camera bag that I use as a normal bag to transport all kinds of "Stuff". I do have now a Loewepro Slingshot 200 Cameraback that is fantastic! :-) it contains my Canon 20D, 3 DSLR lenses and my little Panasonic FZ50. And, so cute!, it has an extra compartment to host 4 storage-cards
http://www.cameraworld.co.uk/ViewProdDetails.asp?prod_code=PON05H000056&Prod_nam e=Lowepro+SlingShot+200+AW&CAT_CODE=17&SUBCAT_CODE=239
The green sign, you don't have those in the USA?
You see them here in all public buildings. They mark the emergency excits. They are illuminated even if the electiricity is off. My room is beside the emergency exit, so I don't have to mind to turn the telly loud
Today I walked 550m
It's a sunny day so I was sitting with my mum on our big ward-balcony and enjoyed the sun and the fresh air.
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iLLios
Member
Username: frank_g
Post Number: 366
Registered: 05-2008
| | Posted on Saturday, August 30, 2008 - 10:50 am: |
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Risa, yes - I was kidding.
These trees are real!
They do not offer here mucus release physiotherapy.
What they do is to realease muscle tensions in the chest - yes.
But the doctor told me to do inhalations with the famous ACC now 3 times a day.
So, I do not only drink "ACC long" twice a day - I also have to do inhalations with that stuff.
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Heather
Member
Username: heather
Post Number: 1207
Registered: 05-2003
| | Posted on Saturday, August 30, 2008 - 11:03 am: |
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Frank..nope..I have never seen the green man running sign before..are those the only kind of emergency signs you have over there? I am trying to think..I think around here they just say emergency exit only...no pics. However..I did a search (ok I am wierd) on emergency signs and I did see the green guy running... I have just never seen it before.
Hope today finds you feeling better. What a nice view you have...
I have been praying for you and will continue to do so.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Hostess Risa
Member
Username: risa
Post Number: 6150
Registered: 05-2003
| | Posted on Saturday, August 30, 2008 - 11:11 am: |
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Hi Frank
Do you mean Mucomyst NAC? What is ACC? Acetylcysteine?
I am shocked that they do not recommend CPT. Did anyone ever teach you how to huff cough?
This is what I do if I need to cough.
You can place both palms on the outside of your knees. Take a deep breath and while you exhale (mouth open making the sound HUFF) close your legs with hands creating a slight resistance. It is like doing an isometric on exhalation.
It works your arms and legs and helps to bring out mucus. I sort of came up with this myself by adding the huff technique that is big here in the USA.
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iLLios
Member
Username: frank_g
Post Number: 367
Registered: 05-2008
| | Posted on Saturday, August 30, 2008 - 11:42 am: |
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Heather,
yes - that is the official emergency exit sign/pictogram. I think it is standardized in whole europe.
Thank you for praying Heather! My mum told me today that I already do look stronger and can walk longer distances.
Risa,
yes - Acetylcystein is ACC.
And yes - I was huff caugh taught years ago - in the 90's.
They offer no autogenic drainage treatment here.
It's good to have physiotherapeutic support while doing drainage - at least once a week to completely clear the lungs. It's not offered here.
Your isometric work while huffing sounds good! I'll try it while huffing - thank you!
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Hostess Risa
Member
Username: risa
Post Number: 6153
Registered: 05-2003
| | Posted on Saturday, August 30, 2008 - 11:45 am: |
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GOOD! I smile when you try the things that worked for me. I also have taken a light belt or scarf and wrap it around my chest and on exhalation I huffed out.
Whenever I had a cold, I practice these techniques. A pillow is also good.
Autogenic drainage is wonderful and it is worth all the effort.
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Hostess Risa
Member
Username: risa
Post Number: 6154
Registered: 05-2003
| | Posted on Saturday, August 30, 2008 - 01:46 pm: |
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Frank
This is my favorite picture of yours. I can feel peace and love looking at this picture. Tell us about your art therapy.
http://www.transplantbuddies.org/arts/images/frank_08.jpg
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Heather
Member
Username: heather
Post Number: 1208
Registered: 05-2003
| | Posted on Saturday, August 30, 2008 - 02:08 pm: |
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Sorry but you guys sound like a couple of spray paint/glue sniffers. Isn't that called huffing also???
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Happy2Bhere
Member
Username: happy2bhere
Post Number: 1043
Registered: 02-2008
| | Posted on Saturday, August 30, 2008 - 02:21 pm: |
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Frank, if I am ever in a hospital again, that's the kind of surroundings I want. Beautiful !!
Thanks for sharing.
Ol' Bob
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iLLios
Member
Username: frank_g
Post Number: 368
Registered: 05-2008
| | Posted on Saturday, August 30, 2008 - 02:25 pm: |
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Thank you Risa,
I took this picture one evening in my favorite park in Hamburg.
It's indeed a very peacefull and over 200 years old place, having it's roots in 1794.
http://www.jenischparkverein.de/cms/website.php?id=/de/park.html
I cannot tell you much about the art therapy.
It's offered once a week.
I have been there now 1 time and most of the time we spend talking about Thorsten.
They offer you to paint pictures in aquarell or with acryl colors.
Maybe after the next lesson I can tell you more :-)
Regarding autogenic drainage:
I understand, that you have to lean backwards in order to clean the upper lungs. I tried this now for 1 hour. I feel that my very upper lungs are filled with mucus - close to the throat, but not the main bronchus but in the areas on the left and right, in the tip (top?) of the lungs.
http://www.modernealtenpflege.de/Erkrankungen_im_Alter/Atemwegserkrankungen/lung e2.jpg
Breathing creates lots of sounds - it sounds very close to the throat, yet it isn't at all. So huffing makes no sense too.
Maybe i should try this position:
http://www.dkimages.com/discover/Home/Health-and-Beauty/First-Aid/Internal-Bleed ing/Internal-Bleeding-1.html
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iLLios
Member
Username: frank_g
Post Number: 369
Registered: 05-2008
| | Posted on Saturday, August 30, 2008 - 02:33 pm: |
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Heather "Huffing is a type of cough. It also involves taking a breath in and actively exhaling. It is more like “huffing” onto a mirror or window to steam it up. It is not as forceful as a cough but can work better and be less tiring."
source: http://www.cff.org/treatments/Therapies/Respiratory/AirwayClearance/#Airway_clea rance_techniques
I learned this very late in my 30s as I never have been a CF child (but my lung disease was similar to CF).
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iLLios
Member
Username: frank_g
Post Number: 370
Registered: 05-2008
| | Posted on Saturday, August 30, 2008 - 03:41 pm: |
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Bob, me too. :-)
This is not a hospital. It's a rehab clinic.
The transplant center in hannover, the hospital this rehab center cooperates with, unfortunately isn't that beautiful.
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LadyDi
Member
Username: ladydi
Post Number: 980
Registered: 03-2008
| | Posted on Saturday, August 30, 2008 - 03:47 pm: |
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Frank,
It is easy to see from your posts that you are doing better and the rehab has been helping not only your body but your soul. Good work, Frank! Keep it up!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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Heather
Member
Username: heather
Post Number: 1210
Registered: 05-2003
| | Posted on Saturday, August 30, 2008 - 04:37 pm: |
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I was just teasing you about the huffing.
How long did you say you had to be at the rehab center? I hope you get stronger every day.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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iLLios
Member
Username: frank_g
Post Number: 371
Registered: 05-2008
| | Posted on Sunday, August 31, 2008 - 12:44 am: |
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LadiDi, thank you!
What's good here: I do not have to care for homework. My room is cleaned every day. I do get my food, lot's of friendly people here, silent and calm surrounding. If you leave your room there's always someone you can communicate with, if you want. All personal is friendly(!). Having lot's of laugh. And, you can feel secure trying "new things" without being afraid to be stranded somewhere and no one recognizes it.
A friend of mine is sending me every evening, after i went to bed, Reiki.
Heather, I know that you teased ;-)
Just wanted to give some information in case somebody who does not know is reading this.
Tomorrow I am here for 1 week. And I have 2 weeks left. I'll ask the doctors if I could get a one or two weeks extension.
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iLLios
Member
Username: frank_g
Post Number: 373
Registered: 05-2008
| | Posted on Sunday, August 31, 2008 - 11:09 am: |
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Wonderful day today. I was a bit in the park, and at the front entrance - taking pictures and watching people. Walked 440m today.
The pneumology wards own "penthouse" terrace:
The Main Entrance:
Park side of the clinic:
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Hostess Risa
Member
Username: risa
Post Number: 6167
Registered: 05-2003
| | Posted on Sunday, August 31, 2008 - 12:02 pm: |
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Hi Frank
I enjoy looking at where you are staying. You are definitely pictured in my mind well for prayers. I like Reiki I had a few sessions throughout the years. I like Quantum touch http://quantumtouch.com Very similar to Reiki.
Do they practice Healing Touch? This is my favorite.
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iLLios
Member
Username: frank_g
Post Number: 374
Registered: 05-2008
| | Posted on Sunday, August 31, 2008 - 01:17 pm: |
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Risa, I haven't meet here yet someone practicing healing touch.
My friend from Hamburg, who sends me Reiki every evening, is a yogic healer, practicing "Sat Nam Rasayan".
More pictures
Another view of the training room:
The wards corridor watched from it's other end:
in the park:
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Tonya
Member
Username: squeek
Post Number: 92
Registered: 04-2008
| | Posted on Sunday, August 31, 2008 - 02:17 pm: |
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Hi Frank,
That is quite a nice facility.
Keep the progress reports coming
Hodgkins Lymphoma Survivor 5-yrs
Dx: Severe Restrictive Lung Disease
Pulmonary Fibrosis and Cardiomyopathy
Awaiting next appointment at Duke for plan
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iLLios
Member
Username: frank_g
Post Number: 375
Registered: 05-2008
| | Posted on Sunday, August 31, 2008 - 02:35 pm: |
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I do my best Tonya :-)
My Programm for tomorrow:
07.20 am - I have to donor some blood ;-)
10.00 am - Massage
11.30 am - Physiotherapy
01.00 pm - Ergometertraining, Muscletraining
03.00 pm - conversational circle lung-tx nutrition
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Hostess Risa
Member
Username: risa
Post Number: 6169
Registered: 05-2003
| | Posted on Sunday, August 31, 2008 - 03:57 pm: |
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Please explain what you mean Donor some blood. Do you mean to give some blood for testing or to store blood for the future?
I know what massage is lol
What do you call muscle training? Lifting weights?
What is conversational circle lung tx nutrition. Is that where you get together and talk about nutrition with a few people?
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iLLios
Member
Username: frank_g
Post Number: 376
Registered: 05-2008
| | Posted on Sunday, August 31, 2008 - 04:10 pm: |
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Risa,
I was joking - yes, give some blood for testing. They often take that much - looks to me like a blood donation
Yes, lifting and pushing all kind of weights.
Yes, talk about save cocking and nutrition for transplanted people with a a few people and an nutrition scientist.
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LadyDi
Member
Username: ladydi
Post Number: 982
Registered: 03-2008
| | Posted on Sunday, August 31, 2008 - 08:11 pm: |
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Very nice photos Frank! Hope you are becoming stronger each day.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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iLLios
Member
Username: frank_g
Post Number: 377
Registered: 05-2008
| | Posted on Monday, September 01, 2008 - 05:07 am: |
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Thank you LadyDi.
I do my very best but this morning I do not feel strong at all.
Actually I feel very bad, very short breathed.
I recieved a massage at 10am - we had to stop after 15min. I felt it was too challenging to me.
My Physiotherapist did Vibrax with me this morning to get the mucus out. No result.
4 days ago I took my last dosage of Ciprobay 500 and the mucus in my lungs started to become dark green again, I can even taste it :-( In addition it is very, very difficult to get it out. Only little amounts i do get out.
1week is over now.
I came here with a weight of 83,6 kg and the wish to gain weight. After one week I am at 82,2 kg. Means I lost 1,4 kg.
My evening FEV1 droped from 0,85/0,88 to 0,80 now.
I gained more power in the arms and my morning pulserate dropped, but it is rising again.
I do not feel well.
They got blood for testing this morning and a probe of my mucus that is very tenaciously.
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papillonbleu
Member
Username: papillonbleu
Post Number: 859
Registered: 10-2007
| | Posted on Monday, September 01, 2008 - 08:03 am: |
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Dear Frank,
I am sorry that you are not feeling well. I hope that some way can be found to help you to feel better and gain weight. I will be sure to continue to keep you in my prayers and thoughts, and you have all the support I can muster. Best of wishes.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 378
Registered: 05-2008
| | Posted on Monday, September 01, 2008 - 10:06 am: |
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Thank you Bobbiejo, for your support.
Maybe it's my old issue - I overdid it again in the past 2 days? I walked 550m at saturday and went to the park and walked a total of 440m yesterday.
+ we do not have "gustav" but low pressure weather today here too. Many on the station had Problems this Morning.
I feel absolutely exhausted. Even cried because of fatigue.
But i managed to do my daily training well.
8minutes Ergometer with 1 minute break after every minute = 16minutes.
dumbbell bizeps and trizeps training with 2kg dumbbells (5x10 and 3x10).
Legpress, 3kg - 3x10
Rowing, 8kg - 3x10
I missed the conversational circle Thought it was at 4pm...
The nutrition scientist is a young attractive lady - I'm sorry that I missed it!
I listened to a hypnosis relaxation mp3. "Jouney to your own Relaxationplace".
It's in german language. If you want to listen to it:
http://www.mentaltraining-beckers.com/giveaway/download.php?fname=./die_reise_zu m_eigenen_entspannungsort.mp3
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Heather
Member
Username: heather
Post Number: 1217
Registered: 05-2003
| | Posted on Monday, September 01, 2008 - 10:40 am: |
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Hi Frank. I am so sorry you feel so bad. I can "hear" it in your posts. I am praying for you also and sure hope you will feel better soon. I have a few pics I would like to share with you and ask you what happened when I took them...they are strange.
You need to keep those arm muscles strong ...you HAVE to be able to handle that camera! We sure would miss all your great photos.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Jeff
Member
Username: jeff
Post Number: 1102
Registered: 07-2007
| | Posted on Monday, September 01, 2008 - 11:06 am: |
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Hey Frank, just wanted you to know that I am thinking of you and hope that you start feeling better. The rehab center looks awesome, a very nice place. Keep getting stronger my friend!!
Heather- I found the green man running exit signs a little ironic considering they are in a rehab clinic. Frank, ours here in the US just say EXIT with an arrow.
Jeff W.
Forum Leader-Kidney
Kidney transplant Oct. 26,2007
Living donor, my sister Patty
email: unclemud@gmail.com
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Karen R.
Member
Username: relivkaren
Post Number: 1632
Registered: 07-2007
| | Posted on Monday, September 01, 2008 - 11:09 am: |
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Frank:
I love all the pictures of your rehab center. It is just like Risa said - it gives me a great idea of where you are and how to pray for you.
I am so sorry to hear that you are not feeling well now. Maybe they should put you back on some antibiotics. Sounds like the green mucus might be the problem. I hope your doctor allows you to stay there for a few more weeks like you have requested. I liked what you said about feeling secure to try new things, knowing that you won't be stranded or alone.
I am praying for you daily. Get some rest and hopefully you can get rid of that mucus.
Keep us up to date.
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 379
Registered: 05-2008
| | Posted on Monday, September 01, 2008 - 02:35 pm: |
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Shure Heather, please share your pictures!
Do you want to upload them here in the forum in a new thread?
My plan for tomorrow:
08.00am breakfast
09.30am infrared radiation treatment (10min.)
11.30am Lunch
01.00pm Ergometer and Weight lifting training
02.00pm Conversation Circle about the psychological aspects of a lung transplant with the Psychologist Mr. Spratte
02.45pm Heartecho (Diagnostics)
03.30pm Physiotherapy
04.00pm Art-Therapy
05.30pm Dinner
Thank you Karen, Heather and Bobbiejo for your support and prayers!
Jeff, yes - it is ironic to have this running little man as most of us are only able to walk very very slowly ;-)
I go to bed now.
Have a nice and peaceful night and a good sleep.
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LadyDi
Member
Username: ladydi
Post Number: 996
Registered: 03-2008
| | Posted on Tuesday, September 02, 2008 - 07:00 pm: |
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Hope you are feeling better today, Frank. Update us when you can.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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iLLios
Member
Username: frank_g
Post Number: 381
Registered: 05-2008
| | Posted on Wednesday, September 03, 2008 - 05:41 am: |
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Lady Di,
I didn't feel well yesterday.
My FEV1 in the morning was 0,66L - raised in the afternoon to 0,78 again.
I felt so weak, exhausted and shaky,... I had to drop the conversational circle and the art therapy. That was too much for me.
Did sport
Positive news: I have no pulmonary heart. Everything OK with my heart.
Had a talk with my doctor and he told me that they didn't found any medical reason why I should feel bad.
No infection signs in the blood.
O2 Sat is OK.
I gave some blood today again - they want to check the electolytes.
I am still not gaining weight - also they give me warm meals twice a day.
What I realised:
I got Ciprobay 500 two times a day for 2 weeks until thursday last week (28.8.).
My FEV1 raised in this time to a level around 0,88L
At 29.8. and the following days my evening FEV1 dropped to 0,82|0,81|0,8|0,79|0,78
I gained weight until 30.8. then my weight dropped again.
Today I am below 82kg. Lost more then 1,5kg here - I should gain weight.
Through the stress of the death of Thorsten I first lost weight (1kg), but then gained it again and was last friday at the level I had when I arrived here.
Today I had 81,9kg.
I walked with my mother on saturday 550m in and outside the house.
On sunday I walked 490m - alone!
On Monday I walked 120m
Yesterday I had to partly be driving around with a wheelchair. Walking only very slow. Today I do not feel better.
They still haven't found out yet any medical reason why I should feel bad. Now we are waiting on the bacteriology results.
If they do not find anything and i do not feel better they want to bring me to the hannover hospital before the regular ambulance date I have next week wednesday.
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iLLios
Member
Username: frank_g
Post Number: 382
Registered: 05-2008
| | Posted on Wednesday, September 03, 2008 - 05:45 am: |
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Forgot to mention:
I just ordered yesterday an Sony NWZ A 816 B MP3 player at amazon.de
So i'm able to listen to my meditation music and relaxation MP3s while I'm laying in bed or when I'm outside my room. :-)
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papillonbleu
Member
Username: papillonbleu
Post Number: 867
Registered: 10-2007
| | Posted on Wednesday, September 03, 2008 - 06:34 am: |
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Dear Frank,
I wish that I could somehow make you feel better. I hope that the doctors may be able to find a cause so that you can be treated and thus feel better. I will continue to keep you in my thoughts and prayers. I am glad to hear that you are getting a way to listen to music. I know that when I am in the hospital and not feeling well that listening to music can really help to uplift me and energize me. May you be able to get the same enjoyment. Best of wishes.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 383
Registered: 05-2008
| | Posted on Wednesday, September 03, 2008 - 10:03 am: |
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Dear Bobbiejo,
thank you for your prayers, they have been very helpful! Because the Doctor saw the problems I have now for 2,5 days and decided to prescribed me antibiotics (Avalox) and told me to rise my Prednisolon Dosage to 30mg / day tomorrow.
I already took the Avalox.
So I am full of hope that this will make me feel better and rise my traininglevel again!
My Training this noon was 10min. on the Hand-Ergometer with 10 Watt and 3 min. on another Ergometer with 15 Watt.
And I did Bizeps and Trizeps Training 4x10 repetition and 3x10 repetition.
Yes, I am curious about my new MP3 player. I never had one before. I bought me at Ebay an Iphone clone a few months ago in order to listen to my music on it but it's not loud enough and has not a good soundquality.
Just joined an seminar, held by my doctor "Life after Transplant". It was about all the do's and dont's you have to be careful about and the risks after a lung transplant.
He did it very well :-)
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iLLios
Member
Username: frank_g
Post Number: 384
Registered: 05-2008
| | Posted on Thursday, September 04, 2008 - 07:47 am: |
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Good News:
I feel much better today !!
Avalox is doing it's job so does the Prednisolon.
Just had my sports:
15 Watt on the Ergometer and 10 minutes.
Legpress 4x10 at 3kg
Rowing 3x10 at 8kg and 2x10 at 9kg
2kg Dumbbells 3x10 Trizeps and 3x10 Bizeps
I managed to walk they way to the training room and back without a break.
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papillonbleu
Member
Username: papillonbleu
Post Number: 883
Registered: 10-2007
| | Posted on Thursday, September 04, 2008 - 08:27 am: |
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Dear Frank,
It gladdens my heart to hear that you are feeling better! I have never had an MP3 player or an iphone, but I hope that the MP3 player will work better for you. May you continue to feel stronger each day.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Karen R.
Member
Username: relivkaren
Post Number: 1648
Registered: 07-2007
| | Posted on Thursday, September 04, 2008 - 02:52 pm: |
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Frank:
Keep working hard! You know it will payoff after your transplant. You'll love your MP3 player. It should hold a lot of music. You can take them anywhere. Even I managed to figure out how to use one.
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Hostess Risa
Member
Username: risa
Post Number: 6218
Registered: 05-2003
| | Posted on Thursday, September 04, 2008 - 04:25 pm: |
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Great news Frank! I am very proud of you.
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iLLios
Member
Username: frank_g
Post Number: 389
Registered: 05-2008
| | Posted on Friday, September 05, 2008 - 07:59 am: |
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Thank you!
I had today Ergometer 10min. with 10 Watts
rowing with 27,5kg (not 8kg - it is 8 steelplates with 2,5 kg) 3x10 rept.
retroflective exersises with 7,5kg 3x10 rept.
legpress - 3 plates (?) 3x10 rept.
I walked stairs. 1 floor up and down again. 2 times with my physiotherapist holding the oxygen - it took me 30min.
And I walked to the elevator and went to the infrared radiation treatment.
As the treatment was over they had to call my station that threy get me back to the station with a wheelchair, my legs didn't want to work anymore and my bloodpressure raised to 147/110
And then I had to move to another room because my room and was needed for another patient, the room was an observation room with an electronic monitor etc.
Nurse Susanne was very kind doing all the moving of my stuff to the other room.
Now I need a rest.
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Meghann "Queen of the O2 People!"
Member
Username: meggymegos
Post Number: 566
Registered: 06-2008
| | Posted on Saturday, September 06, 2008 - 02:02 am: |
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Rest well my friend! You are doing great!
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iLLios
Member
Username: frank_g
Post Number: 391
Registered: 05-2008
| | Posted on Saturday, September 06, 2008 - 11:26 am: |
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Meghann, I do today. :-)
I just had a little sport with the group this morning.
And I had a talk with a friend who is a nurse and she told me that what I experience mostly may be the sideeffects of the medicine I have to take, not the disease. Especially the Avalox Antibiotics. It can make you short of breath and your muscles weak etc..
So I drink a lot to flush the drugs out of my body.
A calm day today.
Wrote a lot emails and worked a bit with Photoshop.
You call me now "Ol' blue Eyes"
@Risa,
I walked the streets of Fort Lauderdale today at Google Earth
You know - It has a 3D funktion that gives you the opportunity to be right on the street. Looks like a nice little town, at least where I have been lurking around.
And what really is a difference to germany: you rarely have public pathwalks in front of your houses / at the streets.
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Heather
Member
Username: heather
Post Number: 1246
Registered: 05-2003
| | Posted on Saturday, September 06, 2008 - 12:19 pm: |
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Frank..I was wondering..how do you do the walking around the streets of a city on google earth? I have that downloaded..the free 4.3 I think. Is it on that version? If so ...can you tell me how to do it? All I can do is get the darn thing to zero in on a location but shows a camera and nothing else.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Karen R.
Member
Username: relivkaren
Post Number: 1658
Registered: 07-2007
| | Posted on Saturday, September 06, 2008 - 02:15 pm: |
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Frank:
That medicine must be working because you seem more like yourself these days. I love the "blue eyes" picture?!?!?
Keep up the great work. You are making great strides. Resting is good too!!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 392
Registered: 05-2008
| | Posted on Saturday, September 06, 2008 - 03:04 pm: |
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Heather, yes - the free 4.3.7 Version.
I'm sure Google do not offer this service for EVERY Town on Earth.
So, try it at Fort Lauderdale - I know that it's working at the Florida Cities :-)
You Zoom down to nearly sealevel and you'll see that you'll have a flat arial view with lots of cameras. Some of these Cameras are in a line, and after a while they become bubbles. Just klick on one of these Bubbles and see what's happening :-)
You step virtually into that bubble and have a 360� panorama picture of the surrounding arrea at that place. in the bubble you see the other cameras next to you too.Just klick on a camera and you'll step into the bubble surrounding that camera.
Give it a try! It's fun :-)
@Karen: I had a funny meeting in the wards lounge with some of the other patients. We laughed a lot and had fun for 2 hours! 3 guys and 3 girls we have been.
An yes, I think the medicine is working.
I just did in 30 min. completely washed myself, partly standing, including shave! My O2 Sat "dropped" to 91% but I felt it is OK.
I feel good tonight!
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Hostess Risa
Member
Username: risa
Post Number: 6229
Registered: 05-2003
| | Posted on Saturday, September 06, 2008 - 08:50 pm: |
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Sounds cool Frank
Glad to hear you are having some good days. The blue eyes are fun to look at.
By the way, can you please update the map. Can you add Israel, Nepal, China and Japan please. Many people forgot to sign your map. I think it would be great if you can just update the new areas.
Love
Risa
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PJ
Member
Username: pj3
Post Number: 71
Registered: 06-2008
| | Posted on Saturday, September 06, 2008 - 10:52 pm: |
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Hey Frank-
I just ran across this thread--I had no idea that you were not feeling well and in rehab. I am so glad to see that you are feeling better. Take care of yourself!
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iLLios
Member
Username: frank_g
Post Number: 393
Registered: 05-2008
| | Posted on Sunday, September 07, 2008 - 01:07 am: |
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Good Morning,
today I feel not ok, my FEV1 dropped to 0,59L Bloodpressure 148/90 - Pulse 88.
And walking from my bad to the table is strenous.
@Dear Risa, please take a look at the map. Except of Nepal, MMOP in Israel, C-Lucky in China and Angelito in Japan have been added to the map 13.8.08 or earlier.
Who shall I add in Nepal?
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iLLios
Member
Username: frank_g
Post Number: 394
Registered: 05-2008
| | Posted on Sunday, September 07, 2008 - 01:22 am: |
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.. not walking from the bad, but the bed :-)
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iLLios
Member
Username: frank_g
Post Number: 395
Registered: 05-2008
| | Posted on Sunday, September 07, 2008 - 03:11 am: |
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Some more pictures.
I had to move to another room on friday.
This is the view from my new balcony. It shows a green roof, a small part of the parking lot and some wood. The room is on the other side of the house, I do not see the park anymore. Now i have morning sun.
Here are 2 pics of my, bigger, new room:
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Karen R.
Member
Username: relivkaren
Post Number: 1667
Registered: 07-2007
| | Posted on Sunday, September 07, 2008 - 07:52 pm: |
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Frank:
Another really nice room. It's nice that it is a bit bigger too. I see you have a walker. I need one like that too. I have a scooter which is so great, but I can't get it in and out of a car so I can't use it by myself. I really need a walker that can be folded down. The one you have probably would be too heavy for me too. I think I will just stick to having someone go with me when I need to go places.
I really hope today was better than it started off!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Hostess Risa
Member
Username: risa
Post Number: 6234
Registered: 05-2003
| | Posted on Sunday, September 07, 2008 - 08:16 pm: |
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Hi Frank
I enjoy seeing your photos. I hope you continue to become stronger.
The new members name is Harisharma
He lives in Nepal.
thanks
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LadyDi
Member
Username: ladydi
Post Number: 1004
Registered: 03-2008
| | Posted on Sunday, September 07, 2008 - 09:17 pm: |
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Hi Frank! Cisco and I have been out of town for a few days. Just catching up on your progress. Sounds like you are feeling better.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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Heather
Member
Username: heather
Post Number: 1258
Registered: 05-2003
| | Posted on Sunday, September 07, 2008 - 09:38 pm: |
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I love looking at your pictures also. Ok...gotta ask..is the grass on the roof a common thing there? I don't see that here..although at a little cafe place in Wisconsin I did see it..plus a few goats up there grazing on the roof..but it is not commonplace here....
Do you like the new room better?
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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iLLios
Member
Username: frank_g
Post Number: 396
Registered: 05-2008
| | Posted on Monday, September 08, 2008 - 05:22 am: |
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Dear Risa, I added Harisharma to the map.
I am sorry to have to tell you all that I am not feeling stronger or well.
I lost 3kg of weight in the past 2 weeks - wanted to gain weight, I do have now 80,7kg (I am 1,93meter tall).
And my FEV1 is dropping more and more.
Had this morning 0,65 Liter.
And besides all that I guess that my medication produces lots of sideeffects.
Sorry - for the not good news.
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iLLios
Member
Username: frank_g
Post Number: 397
Registered: 05-2008
| | Posted on Monday, September 08, 2008 - 06:18 am: |
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I add: just wanted to go to the sportsgroup and only standing behind my walker let my heartrate rise to 125bpm and me breathing like a steammachine. Bloodpressure 145/110.
So I had to cancel sport today for the first time I am here.
Karen, my walker is the simple version - it's a clinic walker. There are light versions, easy to handle and fold - made of Carbon. I would recomend one of these for you.
Heather, yes - flat rooftops often have Gras on it. It's not on all flat roofs but it is also not that unusual.
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Heather
Member
Username: heather
Post Number: 1261
Registered: 05-2003
| | Posted on Monday, September 08, 2008 - 07:20 am: |
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Frank I am so sorry you are feeling worse. So do you think this rehab has helped you at all? I hope you will have a turn.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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papillonbleu
Member
Username: papillonbleu
Post Number: 911
Registered: 10-2007
| | Posted on Monday, September 08, 2008 - 07:39 am: |
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Dear Frank,
My heart aches for you at hearing that you are not doing well. I hope that your doctors can figure out a way to help you to feel better soon. You will continue to remain in my thoughts and prayers. Many hugs.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Heather
Member
Username: heather
Post Number: 1262
Registered: 05-2003
| | Posted on Monday, September 08, 2008 - 08:50 am: |
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Frank..sorry I meant to say..I hope you will have a turn for the better and things will begin to improve for you.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Hostess Risa
Member
Username: risa
Post Number: 6242
Registered: 05-2003
| | Posted on Monday, September 08, 2008 - 09:04 am: |
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Hi Frank
I hope tomorrow is a better day. What do you think this means? Could it be you did not sleep well or did you over do it? Are you worrying about something. Did someone say something to make you upset?
Cheer up, we all LOVE you here.
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Jeff
Member
Username: jeff
Post Number: 1124
Registered: 07-2007
| | Posted on Monday, September 08, 2008 - 09:14 am: |
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Hey Frank, just wanted to know that I am thinking about you and that I hope you get to feeling better. I don't know if you got the chance to watch the Belgium Grand Prix yesterday or not. Spa is my second favorite track after Monte Carlo. It was an entertaining race with a controversial end. Lewis Hamilton (GBR) was the winner but had it taken away giving the victory to Felipe Massa (BRA), wet and dry conditions. Your countryman Nick Heidfeld ended up in P2 after Hamilton's penalty. Kimi Raikkonen (FIN) led almost the entire race until crashing with 3 laps left. Thanks for keeping us up to date with your rehab. We all are pulling for you my friend. Take care!!!
Jeff W.
Forum Leader-Kidney
Kidney transplant Oct. 26,2007
Living donor, my sister Patty
email: unclemud@gmail.com
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iLLios
Member
Username: frank_g
Post Number: 398
Registered: 05-2008
| | Posted on Monday, September 08, 2008 - 11:32 am: |
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Risa, thank you!
I talked to a friend who is a Nurse and reported to her all my medications.
We belief what I feel are the medications sideeffects.
So she arranged my morning, noon, afternoon and evening medicationplans, together with a doctor, and based on Hannovers medicationplan, in a way that the medication is mostly tolerable to my body and he's not overwhelmed with a bunch of medication at one time or the medications interacting with each other in an unwanted way. AND - it still is Hannovers plan, just more interim time between the intakes of single drugs.
That means that I have to take nearly every hour another pill :-)
I sleep well here - but it is the morning time that is hard for me. My FEV1 is falling down in the morning and only slowly recovers throughout the day.
It is possible, that my body is not used to this daily training and tries to adjust to it - I also need more energy because breathing an daily workout simply needs more Energy. I had a talk with the nutrition- scientist, she had some ideas what can be done and she will discuss this with the doctors and tell the kitchen. She will also discuss the issue of pro-biotics with the doctor because I am taking 30mg Prednisolon and 3 Antibiotics. Yesterday I had diarohoe again.
No one said something to upset me.
I had a lot of fun yesterday and saturday.
Maybe I was a bit sad that there wasn't someone who visited me at weekend.
@Jeff: I missed / forgot the race completely! But i had a nice time with the other patients here at the ward :-) We laughed a lot and that was important too. I'm sorry for not being able to see this rain race - and chapeau to "quick Nick" for having the rain-tires on! :-) He is such a nice guy!
And thank you all for caring so much!
I LOVE you all too and I am so lucky and thankful to have found this incredible bunch of you - very nice and precious people! I want to meet you someday, maybe in Paris 2010 ;-)
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LadyDi
Member
Username: ladydi
Post Number: 1010
Registered: 03-2008
| | Posted on Monday, September 08, 2008 - 07:09 pm: |
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Frank, sorry to hear you had problems. Hopefully, taking the medication differently will help.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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Hostess Risa
Member
Username: risa
Post Number: 6252
Registered: 05-2003
| | Posted on Monday, September 08, 2008 - 07:49 pm: |
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2010 sounds like a great plan. I hope they place you on probiotics. I take one daily which helps to prevent C-diff.
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PJ
Member
Username: pj3
Post Number: 73
Registered: 06-2008
| | Posted on Wednesday, September 10, 2008 - 01:32 am: |
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Hey Frank--
How are things going??? I hope you're feeling better!
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papillonbleu
Member
Username: papillonbleu
Post Number: 920
Registered: 10-2007
| | Posted on Wednesday, September 10, 2008 - 06:07 am: |
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Dear Frank,
I hope too that you are faring better. You continue to remain in my thoughts and prayers. Many hugs.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 399
Registered: 05-2008
| | Posted on Wednesday, September 10, 2008 - 06:50 am: |
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Hello, @all!
I just arrived back in Fallingbostel from my trip to the Hannover Medical School Clinic (Transplant Center) this morning.
My FEV1 dropped to 0,51 this moring. I was driven through the clinic with a wheelchair. They thing I have an infect in the lungs and want to treat it now with i.v. antibiotics.
The trip was extremely exhausting.
Now I am allowed to eat something and relax this afternoon.
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Karen R.
Member
Username: relivkaren
Post Number: 1675
Registered: 07-2007
| | Posted on Wednesday, September 10, 2008 - 10:07 pm: |
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Frank:
I haven't posted much in the last few days because I was in Cincinnati with my Dad. He had surgery on his heart to remove a benign tumor. He is doing great. We are thankful for that!
I am so sorry that you are struggling though. That doesn't make me happy. I was so hoping to log on and find you feeling better after getting on all the new meds. Maybe the IV antibiotics will knock out the infection and you will be able to feel better soon.
I have a lot of trouble getting started in the morning. It takes a good 3 hours or so after I am up for me to be able to move around a lot. It may just be the nature of the rejection. If I am correct, isn't chronic rejection sometimes called Bronchiolitis Obliterans Syndrome? If that is what you are experiencing, then you feel a lot like I feel. My FEV1 is at 13% I don't know what that is in liters, but it's bad. I can have a resting sat on 3 liters of O2 at 98%. Now when I go to move, it drops to 91 or lower. My last 6 min. walk test I dropped to 89% with 6 liters of O2. I know that if I have a cold or flu I can hardly move and I get really exhausted doing anything.
Just try and rest and let those antibiotics work. I am praying for you everyday. I am ready for 2010!! I should have my new lungs by then too! Let's do it!!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 400
Registered: 05-2008
| | Posted on Thursday, September 11, 2008 - 01:37 am: |
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Good Morning Karen!
Yes, we are experiencing the same disease. My FEV1 is creeping around 15% now.
My Rehab Doc motivated me yesterday.
They will evaluate me in beginning of 2009 for re-transplant.
And i have a ll chances to survive this time very well. My O2 is still very well - at 1,5 Liter I am still at 96% to 98% Sat. When I move I need 2 Liter but my sat doesn't drop below 91%. My blood is good and, fortunately, my body tolerates all these drugs well too.
Let's see in 2010! 
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Karen R.
Member
Username: relivkaren
Post Number: 1692
Registered: 07-2007
| | Posted on Thursday, September 11, 2008 - 10:22 pm: |
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Frank:
That is good news that they are going to retransplant you. 2009 is just around the corner. I have been living on 14-13% FEV1 for almost a year now. I started my evaluation last October and my FEV1 was 14%. I am still here. My O2 saturation has gotten worse, but I am still holding my own. I really think the key to my stability is eating well, exercising, and taking good supplements. Probiotics for sure!
I will be praying that you get your transplant in the first part of 2009!!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 403
Registered: 05-2008
| | Posted on Friday, September 12, 2008 - 03:15 am: |
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Karen, you are so sweet. Makes me cry.
You are as my rehab doc so encouraging!
He told me that they wouldn't let me down, that I can make it through to 2009, that he is very confident about that if I constantly continue my training.
I do get an i.V. therapy with Tazobac Antibiotics now.
Yes, my O2 situation got a little worse too. But only a very, very little :-)
I still need resting only 1,5 Liter O2 and when I walk I take 2 Liters. When I move (walk) now my Sat sometimes drops to 91% - but that is all still ok.
And that's what my doc told me too.
My O2 sat is good, my blood is good, I am young - there is nothing I have to worry about. I will make it.
Funny: You read that they will re-transplant me.
I heard that they will only re-evaluate me. I will have to work on my positive outlook. :-)
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iLLios
Member
Username: frank_g
Post Number: 405
Registered: 05-2008
| | Posted on Friday, September 12, 2008 - 08:59 am: |
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Success:
Today I do not feel well.
My physiotherapist went to the stairway with me anyway.
After increasing my O2 flow to 3 Liters I managed to "climb" 3 floors up 54 steps up and 18 steps down.
Yahooo!
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Karen R.
Member
Username: relivkaren
Post Number: 1693
Registered: 07-2007
| | Posted on Friday, September 12, 2008 - 02:11 pm: |
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Frank:
You are right! I did read that they would retransplant you in 2009, but when I went back to re-read it - it said evaluate to retransplant in 2009. My mind can only believe one thing - that you will get your transplant in 2009!! I am standing by my original statement!!
I am sorry that today is a hard day. Do whatever you have to do to keep up the exercise. If you have to increase your O2 do it!! Just don't sit around. When I first got sick, we spend almost 1 1/2 years just trying to get a correct diagnosis. I didn't do anything but sit on the couch or sleep. I lost all of my muscle mass. It was really hard to start putting it back on. Finally after 10 straight months of lifting weights and using bands I am finally seeing some of my muscle come back. Just don't stop and you will be okay!!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Jeff
Member
Username: jeff
Post Number: 1157
Registered: 07-2007
| | Posted on Friday, September 12, 2008 - 02:26 pm: |
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Hey Frank, sorry you aren't feeling to well today. I think Karen is right, stay positive and keep exercising to the best of your abilities, it will pay off in the long run. You have to love Karen's positive attitude, I think it can be contagious. I know my first week home from tx, all I wanted to do is sleep and lay around but my step dad would make me go out and walk everyday and I think it paid off in the long run. Granted, I didn't have lung issues, just a big scar from my bladder to my hip, but the walking made the pain become less with every step. Keep fighting my friend, it will get better!
Jeff W.
Forum Leader-Kidney
Kidney transplant Oct. 26,2007
Living donor, my sister Patty
email: unclemud@gmail.com
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iLLios
Member
Username: frank_g
Post Number: 406
Registered: 05-2008
| | Posted on Friday, September 12, 2008 - 04:20 pm: |
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Karen, you are good motivator! Yes, I was lying in bed too much in the past months too, getting weaker and weaker. I will not do that again. And yes, that's right: If it needs to increase the O2 - why not?!
Thank you for standing by your original statement!!
And Jeff, you are right, it is getting better! I am carefully optimistic.
Tonight I made an FEV1 of 0,84 Liter. That is the best FEV1 since 2 weeks!
Tomorrow my parents visit me.
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Heather
Member
Username: heather
Post Number: 1290
Registered: 05-2003
| | Posted on Friday, September 12, 2008 - 05:44 pm: |
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Hi Frank! I stand with Karen and believe you will be retransplanted in 09.
She is quite the little motivator, isn't she?? Gotta love her. I hope each day finds you stronger and able to do more. Don't worry about the not so good days..sure they will be there..but there will also be good days ahead!!
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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LadyDi
Member
Username: ladydi
Post Number: 1023
Registered: 03-2008
| | Posted on Friday, September 12, 2008 - 07:24 pm: |
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Wow Frank! Climbing 3 floors when you are not feeling well - you are doing better than I can do on a good day! I am sorry you have not been feeling well. I hope you have a good visit with your parents tomorrow and that it raises your spirits. You should post a photo of you with your parents - I would like to see them.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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Hostess Risa
Member
Username: risa
Post Number: 6289
Registered: 05-2003
| | Posted on Friday, September 12, 2008 - 07:43 pm: |
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Enjoy seeing your parents. Keep up the great work. When looking at your fev1 try to judge it overall looking for a trend rather than just one reading. You can achieve whatever you set your mind to. We are all rooting for you.
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Karen R.
Member
Username: relivkaren
Post Number: 1704
Registered: 07-2007
| | Posted on Friday, September 12, 2008 - 09:38 pm: |
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Frank:
I am only a good motivator because I had a lot a great motivators that helped me - my Transplant Buddies. Just keep telling yourself everyday that you are doing this to be strong and ready for your transplant. As they saying goes - "Keep your eye on the prize!"
I wish you a wonderful day with your parents. It will be so nice for you to be able to spend some time with them. I am sure you miss them very much. Have a fun day!
Keep looking forward to your new life and you will be just fine!!
I am always keeping you in my prayers!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 408
Registered: 05-2008
| | Posted on Saturday, September 13, 2008 - 12:36 am: |
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Hello & good Morning!
I guess I could split my days in two parts: the good late afternoon and evening and the rest.
Do you have the same problems with the morning time Karen?
Thank you all for your inspirational words!
Risa, yes, there was / is a trend in the past weeks and I do not like it. Now I am cautious optimistic, allthough my FEV1 this morning...
I added all data of the past months into an excel chart and created graphs.
I created a chart too for the time I spend in rehab.
The dark blue line is the morning fev1, pink = noon and green = evening.
You can also see the trendlines.
It's measured in Liters. I do not know how you measure the FEV1 in the US.
0,6 is 600 milliliter. It's all below 1 Liter.
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papillonbleu
Member
Username: papillonbleu
Post Number: 941
Registered: 10-2007
| | Posted on Saturday, September 13, 2008 - 06:13 am: |
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Dear Frank,
Karen is certainly an inspiration, but you have inspired me too with all the hard work you doing to make yourself stronger despite all else. Keep at it and I am sure that it will be worth it in the long run. I know that before my transplant I was tempted to lay around all day, but I pledged to myself that no matter how I felt I would at least try to take a walk a day. Something that seems small, but I think it really made a difference for when I did get my transplant. I hope that you are able to have a good day with your parents. You continue to remain in my thoughts and prayers. Best of wishes.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 410
Registered: 05-2008
| | Posted on Saturday, September 13, 2008 - 12:56 pm: |
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My parents visited me today...
I enjoyed it to see them both.
me gasping for some air at my desk.
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Heather
Member
Username: heather
Post Number: 1295
Registered: 05-2003
| | Posted on Saturday, September 13, 2008 - 01:28 pm: |
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What wonderful pictures, Frank. Thank you so much for sharing them. It looks like you had a great time visiting with your parents. How long were they able to stay with you? How far away do they live?
Also looks like they feed you VERY well..you need more room on your table..haha. Do you have a good appetite?
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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iLLios
Member
Username: frank_g
Post Number: 411
Registered: 05-2008
| | Posted on Saturday, September 13, 2008 - 01:49 pm: |
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Heather, yes, that picture was taken before my father helped me to clear my desk
Yes, they feed me well. For dinner I get a hot meal (rice porridge with hot cherrys today) + 3 slices of bred with butter and stuff like cheese, cold meat and so on, hot chocolate, joghurt, lots of stuff. I cannot eat all this, but I try to eat as much as I can. I have a good appetite and am often hungry too. Need some extra high energy drinks (Fresubin).
My parents live about an hour away from the clinic. (mostly driving over the Autobahn) They have been able to stay for 2 hours.
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Jeff
Member
Username: jeff
Post Number: 1164
Registered: 07-2007
| | Posted on Saturday, September 13, 2008 - 03:01 pm: |
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Frank, it looks like your parents picked a nice sunny day to come and visit. I hope you enjoyed the time spent with them. I only see my mom about once a month and my father about twice a year.
Your desk resembles mine at work. It's a wonder how I even get anything accomplished! Looks like you even have a stash of cookies or crackers on the shelf behind you. I am glad you have a healthy appetite, that should give you the fuel you need to exercise. Best wishes!
PS. Congrats to your countryman Sebastian Vettel on capturing the pole position for tomorrows Italian GP, the youngest driver to ever win pole position in F1!
Jeff W.
Forum Leader-Kidney
Kidney transplant Oct. 26,2007
Living donor, my sister Patty
email: unclemud@gmail.com
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LadyDi
Member
Username: ladydi
Post Number: 1025
Registered: 03-2008
| | Posted on Saturday, September 13, 2008 - 03:17 pm: |
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Thank you for sharing the wonderful photos! I love the first one of you and your parents - the three of you look so very happy to be spending time together. Hope today was a good one for you.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
Courage is being scared to death and saddling up anyway - John Wayne |
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Heather
Member
Username: heather
Post Number: 1297
Registered: 05-2003
| | Posted on Saturday, September 13, 2008 - 03:50 pm: |
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You are too funny, Jeff. I noticed the cookies and crackers also. Made me hungry.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Karen R.
Member
Username: relivkaren
Post Number: 1706
Registered: 07-2007
| | Posted on Saturday, September 13, 2008 - 04:19 pm: |
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Frank:
It's so great to see pictures of you with your parents. I am sure that you all had a great time. I am so glad that they can come visit. I live about a little over an hour away from my parents, but I don't see them enough. I love when they visit or when we go to there house.
To answer your earlier question. Morning is a very hard time for me. I don't have a machine to check my FEV1, but I can tell you that I feel as if someone glued my bronchiole tubes shut. It takes me a good 2-3 hours to be able to move around at a decent pace. I nebulize xopenex and saline every morning to get things loosed up. I also wash out my nose and of course take my meds. It takes me an hour or so just to be able to stomach food, but after I eat I start to feel a little better. It's just not an easy time of the day for me. The best time of day - or when I feel as if I can breathe the best is after 7pm or so. I have no idea why, but it has been like this since I have gotten sick. I know our lung function changes throughout the day, but for me it's like it takes all day to feel better and then I go back to bed and start all over the next day.
I hope that you get to see your parents often!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 412
Registered: 05-2008
| | Posted on Saturday, September 13, 2008 - 05:12 pm: |
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Heather and Jeff, you guys seemed to be interested on the stuff I have on my shelf:
Thank you all for your kind words. Yes, it was fun and relaxed to see my parents again :-)
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Jeff
Member
Username: jeff
Post Number: 1166
Registered: 07-2007
| | Posted on Saturday, September 13, 2008 - 05:19 pm: |
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Looks like you have a bit of a sweet tooth Frank! It is a struggle for me to stay away from sweets but I have been good lately. I haven't had any chocolate or candy in a few weeks now. Thanks for the pics!
Jeff W.
Forum Leader-Kidney
Kidney transplant Oct. 26,2007
Living donor, my sister Patty
email: unclemud@gmail.com
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Hostess Risa
Member
Username: risa
Post Number: 6298
Registered: 05-2003
| | Posted on Saturday, September 13, 2008 - 07:57 pm: |
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Glad that I tuned in to find all these wonderful pictures. I had a long day and exhausting to say the least.
Frank how many times per day do you take your PFT? I take mine a few times per week.
You look strong. Keep up the great work. If you took off your o2 you could not tell you were sick.
oxoxo Hugs for Courage, a kiss for the Motivational training you endure.
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iLLios
Member
Username: frank_g
Post Number: 413
Registered: 05-2008
| | Posted on Sunday, September 14, 2008 - 01:11 am: |
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Good Morning!
@Karen, you wrote:
"To answer your earlier question. Morning is a very hard time for me. I don't have a machine to check my FEV1, but I can tell you that I feel as if someone glued my bronchiole tubes shut. It takes me a good 2-3 hours to be able to move around at a decent pace. I nebulize xopenex and saline every morning to get things loosed up. I also wash out my nose and of course take my meds. It takes me an hour or so just to be able to stomach food, but after I eat I start to feel a little better. It's just not an easy time of the day for me. The best time of day - or when I feel as if I can breathe the best is after 7pm or so. I have no idea why, but it has been like this since I have gotten sick. I know our lung function changes throughout the day, but for me it's like it takes all day to feel better and then I go back to bed and start all over the next day."
Karen, that is exatly how I feel too. It's for me too as if I have to recover the whole day from sleep and in the evening, exactly around 7pm too, I often start to feel good as if there is nothing bad in me!
Isn't that strange?
I wonder why it is this way.
I know that morning time isn't the best time for all people with lung diseases. I recall that in my previous lung disease life I didn't made any appointments in the morning because of that.
But this extreme swing in beeing well really is astonishing to me.
@Jeff: Not as sweet as it may look :-)
These things are there untouched now for 2 weeks or so. My mum brought them to me.
@Risa: Glad that you feel so well and can have exhausting days outside your house! :-)
PFT - is that "physical Training"?
We have physical training here every day, except on sunday.
I look strong? Wow... thank you Risa. Yes, that always was my "problem". One couldn`t see how sick I feel.
A motivational training - that's it indeed.
Hugs and Kiss for you for being over the past months a light of inspiration and motivation to me!
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Heather
Member
Username: heather
Post Number: 1301
Registered: 05-2003
| | Posted on Sunday, September 14, 2008 - 07:37 am: |
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mmmmmmm. I LOVE Lindt chocolate..I see you have the orange choc. bar up there.....I like the milk choc. truffle bar myself..they are fantastic. Also the Lindt truffles...white being the best..The Chocolate creme things are looking tasty also. I don't have much of a sweet tooth but every once in a while I want something sweet. Thanks for sharing.
It has been raining off and on all night now...I hope it stays calm here..we are getting the rain and storms from IKE now. Praying the tornados stay away.
Have a great day Frank and stay positive. Try not to speak negative about yourself and your health..tell yourself how strong you are getting and how you are going to have a good day and feel better. Our bodies respond to how we think and what we speak...so try to stay positive...and give yourself a pat on the back once in awhile for what you accomplish.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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papillonbleu
Member
Username: papillonbleu
Post Number: 946
Registered: 10-2007
| | Posted on Sunday, September 14, 2008 - 07:56 am: |
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Dear Frank,
I am glad that you were able to have a good time with your parents, and thanks for sharing the nice pictures. Although for different reasons perhaps because of a different problem, I tend to also feel the worse in the mornings after the long night's rest. My symptoms of nausea and a tendency to vomit always seem to be worse in the morning. I wonder if there is some basic underlying reason why our different symptoms tend to get worse in the morning. Like so many others, I believe in you that you can make it through with flying colors. Best of wishes.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 415
Registered: 05-2008
| | Posted on Sunday, September 14, 2008 - 08:30 am: |
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Hello Heather,
I wish you that it is only some rain and nothing more that arrives at your place and that it continues to stay calm.
Yes, Lindt chocolate is very nice. :-)
it's a strange day. I feel tired and exhausted.
Talked to a friend this morning who is a nurse and told her again how I feel and she thinks, and it very much sounds so, I have a bronchopulmonary allergic aspergillosis.
The signs are (and I have all of them):
dubious loss of weight.
Since i am here I lost 3 to 2 kg of weight allthough I am eating here much more and much more regular as I did at home. But also at home I lost in the past month weight - about 7kg.
if there is a suspicion of an bacterial exacerbation it has low inflamationparameters and an antibiotic infusiontherapy does not shows the wanted effect
It's the 5th day of my infusiontherapy.
I do not feel better, instead I feel weaker, more and more short of breath and less powerful.
increase of asthmatic troubles
really, my O2 level is ok - so my shortness of breath must be asthmatic!
mucus color is brown.
Yes, it often was partly and today it was completely brown.
I send my doc a mail about this and told the nurse about the brown mucus.
If that's true and i have a aspergillosis, I would need 1 - 2 week(s) high dosages of prednisolon that is slowly and carefully lowered under constant obersvation of the lung functuion and more anti-mycotica.
...
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Heather
Member
Username: heather
Post Number: 1302
Registered: 05-2003
| | Posted on Sunday, September 14, 2008 - 01:52 pm: |
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Frank..so far just wind and LOTS of rain here. Texas looks awful. I am thankful I live where I do.
I am sorry you are feeling weaker. If you do have this condition you referred to...does that mean you will be staying even longer than you had anticipated? I know you are probably missing home but when you are not feeling well it is always nice to be somewhere where people can check on you...and it looks like a wonderful place. We have places that nice here..but only for the rich and famous..haha.
I hope you feel better soon.
Heather
Forum Leader - Living Organ Donation
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Hostess Risa
Member
Username: risa
Post Number: 6301
Registered: 05-2003
| | Posted on Sunday, September 14, 2008 - 04:10 pm: |
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Hi Frank
I hope you do not have what you think you have. I would think that your hospital would do tests.
My Grandmother is dying and I have been visiting her every day. I have not lost a love one in over twenty something years so yes I am exhausted. I need to get my life together as I am sure my Grandmother would want me feeling well. She lived a long life. I have so much guilt and that is what is making me feel very sad.
I am glad that I have been a source of motivation for you. I will try and keep that up. Please know you may not feel the same level for a few days. I am going to try and snap out of it.
with love,
Risa
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iLLios
Member
Username: frank_g
Post Number: 417
Registered: 05-2008
| | Posted on Sunday, September 14, 2008 - 05:02 pm: |
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Dear Risa,
I'm sorry to hear that your grandmother is dying.
It's OK Risa not to feel well and to feel guilt in these hard times. You know, my best friend died a view weeks ago and I felt bad too. And he was "just" a friend - not a family member.
But when he died, a view days later, I experienced what Byron Katie describes here >> http://de.youtube.com/watch?v=d2SGzI4e5OA
I realized, that he is not gone, he is still there and that we still can communicate with each other - now on a more subtle level.
I'm shure you are a wonderful granddaughter to your grandmom and that she feels good having you by her side. And you'll find your own way of communication with your grandmom in her dying process.
This is something very gentle, intimate and subtle.
Through giving her you'll recieve a lot and you do not only give her soul but many souls because we are all connected.
Thank you Risa. Thank you for being such a careful angel to your grandmom.
May God continue to bless and protect you.
With Love - Frank
"Lord, in thy hands, may be laid the beginning and the end, may be laid everything."
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Hostess Risa
Member
Username: risa
Post Number: 6303
Registered: 05-2003
| | Posted on Sunday, September 14, 2008 - 05:13 pm: |
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Dearest Frank
I love you. I wish you were here so I could give you a big teary-eyed hug. Your beautiful post made me cry but that is ok. It shows how much you have moved me. I read your post out loud with tears streaming down my face to my husband and he agreed to take me tomorrow. I was fine driving far by myself but the pain is getting too much for me to handle. I am risking my health because she is filled with mucus. I wear a mask and gloves and touch her.
I am glad that I was with her yesterday as I accomplished a lot for her.
I am sorry to interrupt your thread. Back to our topic. If anyone wants to write to me about my Grandma please do so in an email.
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Hostess Risa
Member
Username: risa
Post Number: 6304
Registered: 05-2003
| | Posted on Sunday, September 14, 2008 - 05:39 pm: |
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I love Byron Katie. Thank you for reminding me Frank. Her videos are right on time.
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iLLios
Member
Username: frank_g
Post Number: 418
Registered: 05-2008
| | Posted on Sunday, September 14, 2008 - 11:12 pm: |
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around 6am here...
Dear Risa, fortunately that's my thread so I can decide if I want to "interrupt" it
Although I do not see this as an interruption.
I love you too sweatheart!
And I am glad that you cried and that my post moved you.
Because there is a lot of pressure in you and tears are the best way to let this preassure out and not let it affect your body / your lungs.
Be gentle and careful with yourself.
Do not do more as you think you can handle. Instead, do a little less.
I am shure you know some exercises you can do to protect yourself energetically and open yourself to Gods light.
Death is a powerfull energy. Please give yourself a time limit that you stay with your grandma. And do something lively afterwards. Eat sweet things. This is stress to the body / soul and it needs lots of energy now.
The music of Deva Premal is soothing too.
I once send you the concert link. Her Gayatri Mantra Version was used / played during the dying proess of many people she once reported during a concert.
Yes, Byron Katie is wonderful.
It's always good to have a reality check.
It is also OK to have some distraction that avoids to be permanently in a thought and emotion spiral like watching TV going to the movies or whatever you like.
There is a saying:
"The own death we only have to die. The death of the others we have to live."
All the best to you dear friend. Feel hugged. And please feel free to continue interrupting my thread
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iLLios
Member
Username: frank_g
Post Number: 419
Registered: 05-2008
| | Posted on Monday, September 15, 2008 - 01:50 pm: |
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I had a good day.
Ergometertraining 1min. x 10 with 20 Watt.
Legpress 2x10 with 30kg.
Rowing 4x10 with 30 kg
Walking alone around the house: 500m.
Now I am tired and exhausted.
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iLLios
Member
Username: frank_g
Post Number: 423
Registered: 05-2008
| | Posted on Wednesday, September 17, 2008 - 11:50 am: |
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A good Sportday:
Ergometer 10min. at 15 Watt
Rowing: 3x10 30kg
Legpress: 3x10 30kg
Retroflex 4x10 7,5kg
Stairs 2 floors and back
I felt good afterwards!
Got this evening my first Urbason 500mg i.V. shot.
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Hostess Risa
Member
Username: risa
Post Number: 6322
Registered: 05-2003
| | Posted on Wednesday, September 17, 2008 - 12:52 pm: |
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Congratulations Frank
By the way, I keep on forgetting to ask you what Illios means?
What is urbason?
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iLLios
Member
Username: frank_g
Post Number: 424
Registered: 05-2008
| | Posted on Wednesday, September 17, 2008 - 01:13 pm: |
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Dear Risa,
thank you for the congrats :-)
"iLios" ( I took iLLios because www.ilios.de was already taken) is, as far as I know, in the greece mythology the sun of the sun, the light. "iLios" means "light".
Urbason is Prednisolon.
It is given in high dosages of 500 or 1000mg over 3 days.
I get 500mg now.
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Hostess Risa
Member
Username: risa
Post Number: 6325
Registered: 05-2003
| | Posted on Wednesday, September 17, 2008 - 01:21 pm: |
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why are they giving you this? Did they find acute rejection? I will be thinking of you Frank.
hugs,
Risa
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iLLios
Member
Username: frank_g
Post Number: 425
Registered: 05-2008
| | Posted on Wednesday, September 17, 2008 - 05:51 pm: |
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they give me this because the i.V. antibiotics didn't really work yet and they hope to push back the mucus in my lungs and the infectious feeling.
Now I get tasobac antibiotics i.V. and Urbason 500mg i.V. (3days).
hugs & good night !
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Karen R.
Member
Username: relivkaren
Post Number: 1723
Registered: 07-2007
| | Posted on Wednesday, September 17, 2008 - 05:55 pm: |
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Frank:
I am glad that you had a good day! I am sure it feels good to have a good day. I keep praying for you to have many good days!
Keep up that great work!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 426
Registered: 05-2008
| | Posted on Thursday, September 18, 2008 - 03:33 am: |
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Good morning,
yes - it was good to have a good afternoon and evening.
This morning is not so good again.
I am exhausted.
Sleeped better but sweat a lot again.
My FEV1 raised to incredible 0,87Liter but it doesn't feel so this morning. You know how that is Karen.
The Urbason and a chat with friends keept me up yesterday night until 1 am.
Let's see what the day brings. Yesterday morning I felt even more worse and it turnd to be a good day in the afternoon.
Thank you Karen for cheering up!
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papillonbleu
Member
Username: papillonbleu
Post Number: 959
Registered: 10-2007
| | Posted on Thursday, September 18, 2008 - 07:16 am: |
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Dear Frank,
I hope that this day will also turn out better for you. May the good times be much more frequent. Many hugs.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 427
Registered: 05-2008
| | Posted on Thursday, September 18, 2008 - 07:51 am: |
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OK. Thank you Bobbiejoe.
But this day will be more a relaxing, not an action day.
My Bloodpressure was at 168/110 my Bloodsugar at 230
That's the Urbason.
I wasn't allowed to do more than Handergometer in the sport today.
Lifting weights was not allowed.
And I didn't felt to do so.
I had to move very slowly as my heartrate rised fast and my oxygen fall fast too.
But my Noon FEV1 was at 0,79L!
I'll do now some inhalation, lay down on my bed and try to relax.
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Karen R.
Member
Username: relivkaren
Post Number: 1728
Registered: 07-2007
| | Posted on Thursday, September 18, 2008 - 02:53 pm: |
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Frank:
Yes - I know what it is like to feel yucky in the morning. I deal with it everyday. My husband will ask me in the mornings how I feel and I tell him to ask me again in 2-3 hours. Many times I will wake up and think - oh yuck this is going to be a bad day and it turns out okay once I am up and have time to do all my "stuff." There are so many things that can affect how you feel when your lung function gets this low. A headache can make you feel worse, hormones ( for the ladies), a bad night's sleep, colds, flus, infections. Anything that takes your body's attention away from breathing makes you feel worse. I always say that all my energy goes to breathing and keeping me alive.
I hope today gets better. I am glad that you had good conversation with your friend last night. Oh - those steroids can really keep you awake! Especially the high doses.
Keep hanging in there! You are doing great! Keep telling yourself that you are working hard now so that you can break records when it comes to recovery time. You need your re-transplant so that you can go on liviving and enjoying life!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 428
Registered: 05-2008
| | Posted on Thursday, September 18, 2008 - 06:38 pm: |
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1.30am and i am still up.
Gained 3kg weight in one day - it's all water and raises the bloodpressure in the morning to 168/110 and Bloodsugar to 230 - but that's ok. This evening it was at 120 again.
Tomorrow I will have my last regular day, as I will leave the clinic on monday. The last day with regular sport. And testing, spiroergometry, 6min. walking test, last talk with the doc.
They cannot give me one week more because they have so many people waiting and need my room.
Now, I guess I am happy to come home and I hope to recover from this rehab there. I learned that sports done regular - in my limits - is doing me good and I want to continue that at home.
And I meet wonderful people here.
One is a guy that is re-trtansplanted too. 41 years old. Lived with his first transplant 1,5 years, spend 6 months lying in bed on this station waiting for his new organ, and after 5 weeks of rehab he is now able to walk 500meters in 6min.!
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Karen R.
Member
Username: relivkaren
Post Number: 1734
Registered: 07-2007
| | Posted on Friday, September 19, 2008 - 02:49 pm: |
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Frank:
Have a safe trip home. I am sure it will feel good to be home. You can keep up your exercises at home. I do exercises 3-4 times a week. You just have to be careful and pace yourself.
Have a good weekend and we look forward to hearing from you from your home on Monday!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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iLLios
Member
Username: frank_g
Post Number: 430
Registered: 05-2008
| | Posted on Saturday, September 20, 2008 - 12:52 am: |
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Dear Karen,
yes - i will continue my exercise routine at home.
The transport home will start monday at 9am with KTS = Krankentransport Südheide, a taxi service specialised to transport patients.
My mom will await me at home.
She was yesterday with my cleaning woman at my home for 5 hours - preparing it for my arrival. And today my parents go to IKEA, bying some stuff I could need.
On thuesday I will be evaluated by the "medical service" of the health insurance if i need extra health care money for nursery services. And on wednsday I'llvisit the breathing-rehab center in Hamburg in order to inform myself about their offer to do there medical training therapy.
Lot's to do :-)
My FEV1 graph this saturday morning:
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Karen R.
Member
Username: relivkaren
Post Number: 1741
Registered: 07-2007
| | Posted on Saturday, September 20, 2008 - 07:59 am: |
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Frank:
It makes feel good to know that your parents will be there when you get home. I am 41 and I still want my parents around - especially now that I am sick. My parents have really helped us out a lot. They only live about an 1 hour and 15 minutes away, so they can get to our house pretty quick. They always come when I call. They have been here to help with me and Sammy. They have been so good to me.
We have an IKEA in Ohio. I love IKEA! They have the coolest stuff.
I am glad that you have all that helped lined up for you. Yes - you will be busy, but sometimes being busy helps keep our mind on track - that's a good thing.
I wish you a big welcome home! It will feel good to sleep in your own bed.
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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papillonbleu
Member
Username: papillonbleu
Post Number: 970
Registered: 10-2007
| | Posted on Sunday, September 21, 2008 - 05:57 am: |
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Dear Frank,
I too want to send you the best of wishes for a safe journey home. I am also glad that you have the support of your parents. Like Karen, I feel very grateful to my parents who I continue to remain very close to and who have helped me tremendously as I have been ill. I hope that the transition home will go well and that the things you learned while at the rehab center will help to make you be able to enjoy being home even more. I will continue to keep you in my prayers and thoughts.
Bobbiejo
Forum Leader-Multivisceral
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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iLLios
Member
Username: frank_g
Post Number: 433
Registered: 05-2008
| | Posted on Sunday, September 21, 2008 - 06:48 am: |
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Thank you for your best wishes Bobbiejoe and Karen.
What I guess I still have to accept that i am really ill. So today is not my best day, woke up at 4 am sweating and coughing with a low FEV1. It now recovered, but not me :-)
This is my final FEV1 picture for the past 4 weeks.
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Karen R.
Member
Username: relivkaren
Post Number: 1749
Registered: 07-2007
| | Posted on Monday, September 22, 2008 - 08:53 pm: |
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Frank:
I hope your homecoming was a good one. I know it really tough sometimes, but hang in there! We are all here for you!!
God Bless!
Karen
Dx: Bronchiolitis Obliterans
Waiting for dbl lung tx at Cleveland Clinic
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Hostess Risa
Member
Username: risa
Post Number: 6371
Registered: 05-2003
| | Posted on Monday, September 22, 2008 - 10:00 pm: |
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FranK
We are eager to hear an update. How are you feeling?
Hope all is stable
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Kurt
Member
Username: Kurt
Post Number: 1
Registered: 06-2009
| | Posted on Tuesday, June 09, 2009 - 09:38 am: |
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Hello,
I don't know if this is the right place to post but I have to inform you, that Illios (Frank) passed away on Saturday, May 30, 2009.
He was waiting for a re-transplant ...but God had other plans.
God bless you all
Kurt |
LadyDi
Member
Username: Ladydi
Post Number: 1696
Registered: 03-2008
| | Posted on Tuesday, June 09, 2009 - 10:57 am: |
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Thank you for letting us know Kurt. This has brought tears to my eyes. Frank was a wonderful, caring human being and so important to all of us here. He will truly be missed. Our sympathies to his family and friends on their loss of such a unique and loving person.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
I walk slowly, but I never walk backward - Abraham Lincoln |
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eccoblue
Member
Username: Eccoblue
Post Number: 818
Registered: 05-2008
| | Posted on Tuesday, June 09, 2009 - 11:59 am: |
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I can't express myself without crying. Frank was a fantastic, amazing and talented photographer. He was very much loved by all of the transplant buddies! Now his beautiful spirit has moved on. God bless Frank's spirit and his family and loved ones.
Kelli
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Happy2Bhere
Member
Username: Happy2bhere
Post Number: 2416
Registered: 02-2008
| | Posted on Tuesday, June 09, 2009 - 12:29 pm: |
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This is very heartbreaking news. Another of our Transplantbuddies has gone on to meet The Lord.
R.I.P. Dear Frank
Ol' Bob
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Hostess Risa
Board Administrator
Username: Risa
Post Number: 9356
Registered: 05-2003
| | Posted on Tuesday, June 09, 2009 - 12:35 pm: |
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Dear Kurt and Transplantbuddies
I just read this now and of course I feel so sad I know Frank would not want me to feel so sad.
Frank was a wonderful friend to all of us. I am glad that we became close. It is so strange how we can bond over the internet and feel so close to people who we never met face to face. Frank became a friend to many of us.
I will miss him dearly. Crying tears is healing. That is what Frank would say.
I have a feeling that Frank will be watching over many of us.
with love,
Risa
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papillonbleu
Member
Username: Papillonbleu
Post Number: 1432
Registered: 10-2007
| | Posted on Tuesday, June 09, 2009 - 12:50 pm: |
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I am very sad to hear this too. Frank was such a bright light despite all his difficulties that hearing from him always made me smile. I felt very blessed to have known him. I will be sure to keep his family in my thoughts and prayers. They have my deepest condolences. The memory of his beautiful spirit will not soon be forgotten.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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CiscoKidney07
Member
Username: Gregg
Post Number: 2215
Registered: 03-2008
| | Posted on Tuesday, June 09, 2009 - 02:43 pm: |
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Alas, poor Frank. Such a bright and vibrant person. He will truly be missed by us all. Our thoughts and prayers do indeed go out to his family
| Just do what the directions tell you. Take two tylenol and keep away from children |
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Heather
Member
Username: Heather
Post Number: 2359
Registered: 05-2003
| | Posted on Tuesday, June 09, 2009 - 02:58 pm: |
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I will miss Frank's presence here. He was very full of life, even when he was failing. I wish that he could have made it to retransplant..but as Kurt said...God had other plans.
My prayers go out to his family and friends.
Heather
Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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Karen R.
Member
Username: Relivkaren
Post Number: 3110
Registered: 07-2007
| | Posted on Tuesday, June 09, 2009 - 04:11 pm: |
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Oh my goodness! I am so sad. I was just thinking of him too and wondering how he was. I knew it had been a long time since we had heard from us. Oh - I am so sorry that he didn't make it to re-transplant. Why did they wait so long to get him relisted.? It was obvious that he needed new lungs badly. It makes me upset that they waited so long. He at one time he said that maybe January of 09 they would start the evaluation to get him listed. Why didn't that happen? I am angry and I am sad. He was such a good person and he worked so hard to stay here. He wasn't giving up - his body just gave out on him. I will miss him so much. He was so positive and such a kind and caring man. At least we know that now he is in no more pain and that he is breathing easy and like Risa said - he is watching over all of us.
Good bye my friend. You will be missed but never forgotten.
Godspeed!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Double Lung at Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Tedge
Member
Username: Tej88
Post Number: 163
Registered: 07-2007
| | Posted on Wednesday, June 10, 2009 - 01:37 am: |
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So sorry to hear this news. Frank always sounded like he was fighting hard, keeping positive, looking forward to going home a while back. It is very sad that he couldn't have had another transplant.
My thoughts are with him & his family at this time.
Tedge
GlomeruloNephritis dx October 1978
CAPD 18months
Kidney tx 4th July 1983 New Zealand.
Currently live in France.
God gives me mountains to climb and the strength to climb them. |
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Hostess Risa
Board Administrator
Username: Risa
Post Number: 9361
Registered: 05-2003
| | Posted on Wednesday, June 10, 2009 - 04:51 pm: |
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Our Beloved Frank. We all miss you very much and will always remember you.
This photo is dedicated to our Frank
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papillonbleu
Member
Username: Papillonbleu
Post Number: 1441
Registered: 10-2007
| | Posted on Thursday, June 11, 2009 - 08:57 am: |
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That is such a lovely picture with its variety of colors and how they all work together! My eyes were taken aback for a moment at its beauty. Did Frank take this picture? I think it is a wonderful tribute.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Hostess Risa
Board Administrator
Username: Risa
Post Number: 9364
Registered: 05-2003
| | Posted on Thursday, June 11, 2009 - 01:10 pm: |
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Hi Bobbiejo
I received this picture in an email. I loved this photo and thought of Frank.
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