Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Celebrating for Different Reasons


  • Please log in to reply
26 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 29 September 2010 - 02:33 PM

Well, we all celebrate for different reasons. Today is the 6 year anniversary of my "death day." On September 29, 2004 I suffered my scleroderma crisis, coded blue twice, and went into chronic renal failure. This was after feeling sick since February so diffuse scleroderma came on me extremely suddenly and changed my life forever. Thankfully, I was in the hospital when this happened or I would have died at home. It's been an "interesting" six years with many changes in lifestyle. After reading the internet I truly believed I would be dead in five years. I found this forum and realized that many survive for years and there was hope. And Amanda kept on encouraging me with "there is life after scleroderma."

Forward to 2010. I am almost 7 months post-kidney transplant and am doing very well! I am off oxygen, off anti-depressants, and best of all, have kidney function. I still have scleroderma and always will and things will change as time goes on. Some changes for now:

I had a PFT today at my scleroderma doctor's medical center as per her request. I walked into the room and saw a very different machine than at my pulmonologist. I asked "where is the black bag?" and was told they haven't used a machine like that for 3 years. It made my doctor's look like an antique. I don't know whether it was the machine or me but my numbers improved since my last test! I have interstitial lung disease but it doesn't seem to have progressed over the years. I have decided to have my annual CT scan at the same hospital. When I was first diagnosed, my sclero doctor required me to have them there and read by a certain radiologist, but I have been doing them locally over the past several years. Not anything about small town medical facilities, but the six-minute walk test I had done locally in 2009 was done all wrong. Based on the findings of the echo my doctor will determine whether I have to get another heart catheterization. Again, the first one I had was done locally and the doctor did a left heart cath which doesn't give the needed info and the one I had in January (locally but at a different hospital) was a right and left heart cath but still didn't give my specialist all the info she needs so I will have it done at her hospital.

I also had an echo at the hospital today. I was not a good patient. Apparently, the requirements have changed and more pictures have to be taken so the test is now 30-40 minutes. Mine took an hour! The room was cold even with blankets, I had the yawns and had trouble laying still and you can't move so things had to be repeated. If there is anything major wrong the doctor will be notified immediately, if not she will send me the results in a week or so.

My visit with my scleroderma doctor went very well. She was amazed at the difference in me, even since she saw me in June. She said to my husband, "Look at her!" My skin score went from 11 to 8, I started at 45! I have some tightness around my ankles and feet but I was hard as a rock all over 6 years ago. She deleted depression and renal failure off my chart! I don't have to see her for 6 months! She wants me to return to Physical Therapy for tightness in my shoulders, and Occupational Therapy for my hands for a month. I will have to get this approved by my nephrologist because of the use of the facilities by multiple people and their germs and my weakened immune system and hope he says it's okay because I love my therapists. She said just shower when you come home.

I have come to the conclusion that germs are everywhere, things are always being brought to my attention like, did you know, restaurant menus are full of germs because they are never wiped off and you should never let the waitress put them on your silverware? I can't tell you how many pills I have dropped on the ground because of my bad hands and still taken! So I have had plenty of germs.

The calcinosis on my buttocks is another issue I deal with. My nephrologist says no surgery for a year so I sit on pillows and carry around a portable gel cushion. My dermatologist told me she could remove them in her office, but when I saw her Practitioner last week she said they are so widespread I might have to go to a general surgeon. If they removed them all I would probably need a skin graft, which my scleroderma specialist said would be extremely difficult for me to heal from and I don't want one. If I can have the one really painful one removed I'll deal with the discomfort of the others. So I'll deal.

She was happy to hear I was involved in things again and was interested in the dream granting non-profit I am involved with. I told her I was now the e-Newsletter Manager for the International Scleroderma Network and she was happy to hear that. She was familiar with the Network.

So today I celebrate the bad and the good. Celebrate what you can, enjoy the little things, keep hope in your heart. Always remember the friends and family in your life are the most precious gift you will receive and treasure them. Thank you for being there for me and I rejoice in knowing you always will be there for me and others.

With gratitude,

miocean
ISN Artist

#2 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 29 September 2010 - 10:45 PM

Well done Miocean! Keep going that direction! Happy for you!

Thank you for the update!

Erika

#3 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 30 September 2010 - 03:16 AM

I agree that those rocky roads are best viewed looking back- to look too far ahead when starting is dismaying but looking back gives a sense of accomplishment.
Congratulations on so much progress. (((hugs)))

#4 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 30 September 2010 - 04:25 AM

Miocean, you really do deserve to celebrate after all you have gone through and to know that things are at last going your way. It really is a Happy Day for you. :happy-day:

Take Care

Buttons

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 30 September 2010 - 07:49 AM

Hooray for you Miocean! People newly diagnosed with sclero with or without renal involvement can be so encouraged by your story and not just because you have survived but because of how you survived...with real aplomb! :emoticons-yes:

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 30 September 2010 - 08:11 AM

I am so happy because I can read your post and see how brave you are. Thanks for sharing. This quote from Vincent Peale came to me while I read your post, enjoy it "The secret of life is not what happens to you but what you do with what happens to you."

Hugs,
PattyPosted Image

#7 froggy

froggy

    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts
  • Location:Pittsburgh, PA USA

Posted 30 September 2010 - 12:42 PM

I got choked up reading your story. Thank you for sharing, and kudos to you girl! So good to read of the progress! And You're right,it's something I need to constantly be reminded of, "Consider it all joy when you fall into various trials..."

Peace and many blessings to you,
The Other Andrea =)

#8 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 30 September 2010 - 01:21 PM

Hi Miocean

I am so pleased for you and long may it be a onward and upward joy for you and your family. You all so deserve the good times after all that hardship.

Here are a few words for you and all fellow sufferers, I find it gives me a help along this wacky road we all walk, its an Irish Blessing called "Enough", which you can look up or send me a PM (click on the envelope icon to the left of my name in this forum message) and I'll gladly send it to you.

Bless everyone.

Hugs,
Lynn :emoticon-hug:

#9 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 01 October 2010 - 05:37 AM

Good for you, Janet!!! :emoticons-yes:

You certainly have very good reasons to celebrate; no wonder you feel so pleased!!

I do hope you continue to improve at the same fantastic rate! :VeryHappy:

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 01 October 2010 - 09:06 AM

Congratulations on your celebration day, Janet! I think this means some balloons are in store!

:happy-day: :jump-for-joy: :happy-day:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 01 October 2010 - 06:31 PM

I just have to add this to this post. I am very upset with my nephrologist! After such a good report from my scleroderma doctor, who I have always felt is rather cold but good and what she does and who was smiling and thrilled that I was doing so well, I saw my nephrologist. This is a doctor I LOVE, he has been warm, considerate, called me on Sundays after the transplant to see how I was...

I greeted him warmly when he walked into the office and the first thing he said was "you look tired." I said I feel great. I told him about the good results from my scleroderma doctor visit. He went over my labs and they were good. My specific gravity in my urine was high last week and I was told to drink more fluids, which I did and it was normal this week. My prograf level had dropped so my dose was increased and it was perfect this week. Creatinine and everything fine. I gained 3 lbs. He said "you're gaining weight." I replied that as long as I stayed around 140 lbs (my weight this week) I'd be happy. He had told me originally that I would gain weight because of the prednisone but I have actually lost a couple of pounds. Then he asked if I wore a mask in Memphis. I said, "You told me I had to wear a mask in Vegas but that I didn't need to wear one in Memphis or Mexico". Well, his reaction to my going to Mexico was VERY negative! He finally said, "Can't you stay within the United States, why not go to Hawaii?" I responded that he told me I could go, "That Cabo was very Americanized." (In 2004 there was a Home Depot, Costco, Superstores and there are two American Hospitals, one has dialysis machines and I heard tonight that there is a Walmart). We are staying in a condo with a full kitchen, we have been there 4 times before and know the precautions about the water, fruits and vegetable and ice. He told me he was worried that I would get parasites and not only could I lose my kidney, I could die! My transplant book says after 3 months you can travel within the US and after 6 months international travel as long as you have access to modern medical facilities. He is checking with my transplant nephrologist to see what he thinks. I could see him having concerns if my tests and labs were bad but that is not the case.

I told him I was going for blood work Monday, Sunday and Tuesday the next three weeks because I would be away. He said, "Why are you going for labs so often?" and I said it was because HE told me to go weekly. He had to check the protocol with his nurse and found out that at 7 months out of transplant I should be going every other week.

If this had been my first visit with him I'd be looking for a new doctor. He has been great up until now. I know I have been doing a lot, 3 trips in two months, volunteering for two organizations, getting together with friends and trying to live the live I lost for 6 years. I understand he is concerned that I am overdoing it but I do get plenty of rest and a lot of what I do is sitting at the computer, not physical.

I just had to vent. Here I have this rather unemotional, cold scleroderma doctor who is all smiles and thrilled that I am doing so well, and a day later, this great, personal doctor who is negative, critical, and uninformed. I am thinking about making an appointment with the transplant nephrologist just for feedback. Maybe he was having a bad day?

I know all of you have had your experiences with doctors. What would you do? How should I react? I have already made plane reservations (took out travel insurance, I always do and if you don't you should) and paid for a week in Mexico, the second week is due the beginning of December. I am interested in your responses.

miocean
ISN Artist

#12 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,002 posts
  • Location:Pennsylvania

Posted 02 October 2010 - 05:15 AM

Hi Miocean ,

I'm chiming in a bit late but want to say *congratulations* also. I like happy news and yours is definitely *up there* when it comes to good news!!!

Take care, Everyone. :happy-day:

Margaret

#13 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 02 October 2010 - 07:04 AM

Miocean- difficult doctor- let me see.... Just kidding- if he was just "off" this one visit, it could be he just was letting another problem interfere with your visit. It could be he lost a patient and feels badly about it. Who knows. But if you have another visit where you get instructions that are so different, I would give thought to asking him if you have done something to offend him as this was so much different that your previous visits.

I always have concerns about getting new and interesting bugs when traveling outside of the US. It's simply that I haven't adapted to the local flora and fauna. My usual philosophy about this is to carry a super good water portable water filter and always have cooked food which you seem to already know.

And a second opinion is always a good thing. Would it make a difference if the transplant guy said the same thing?

Anyway, whatever you do, I hope you have tons of fun.

#14 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 02 October 2010 - 08:41 AM

Miocean I think he might be may be one of those people who works at 100% in a crisis and has little interest in the ordinary.

Enjoytheride I found your comment I would give thought to asking him if you have done something to offend him very interesting because it puts the onus on the patient rather than the doctor. The doctor's behaviour is his responsibility and as a professional he shouldn't be having bad days in front of patients nor taking umbrage with a patient. I know you've had issues recently with doctors and personally I would hold the doctor responsible not you.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#15 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 03 October 2010 - 12:36 AM

Amanda- I never intended to suggest that it was Miocean's problem. It was just a way of pointing out to a doctor with whom she has previously had a good relation that the relation is not so good now. But you're right, doctors being doctors, I did feel that tempering a complaint would make it easier for the doctor to address, which may not be true at all. Just my opinion, and I can't say that I personally have much good experience with negotiating care with doctors.

Trying to foot around a doctor who did not provide care just got me 4 years of increasing illness without treatment.

#16 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 03 October 2010 - 01:07 PM

Hi Miocean,

I'm sorry there are concerns about your upcoming trip. I think it's fair enough for a doctor to express their concerns about activities after transplant, because my husband and are are often asking his transplant team whether it is okay/safe to do this or that, as his health changes so rapidly this first year. But, perhaps the key is that we are discussing those concerns with his transplant team, and your transplant coordinator should be the first to weigh in on any/all of your plans that might adversely affect your recovery.

That said, we decided to only take two vacations in his first transplant year, to a familiar cabin which is quite close to home, only 5 minutes from an E.R., and only an hour from his transplant center. And we did that for many reasons. One being that if he ran into problems, help would be close at hand. But another, even greater reason for us, is that we had maxed out on our "Stress Points" very early in the year, and vacations count 13 points each. We figured ours would count a little less, being a familiar place close to home (so less packing, less travel, no trouble adjusting) and we made a point of only taking a relaxing vacation, as opposed to a huge sightseeing one.

Your Stress Points might be much lower than ours, of course. But when you add them up, be sure to multiply the points times the number of vacations (the program only counts one vacation, for example). We gave ourselves 150 points for Gene's transplant alone, since it was the most stressful thing either of us had ever experienced, and even the waiting was nerve-wracking.

Of course, if it is important to you, you have every right to ignore your total score and hope for the best!

See Stress Test: Find your stress level by checking the events you have experienced in your life in the last year.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#17 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 03 October 2010 - 02:00 PM

Hello Miocean

I've sat and read your posts and everyone's replies. Miocean, you have walked a very hard road and suffered a lot, your kidney transplant was a great gift given to you. This doctor has walked this long road with you from the start. From what you've said about him he's gone way beyond what he had to do regarding the great personal care he's always given you along the way.

I think your overall well being matters a great deal to him. Just perhaps this last encounter upset the both of you because you want to live life to the full and catch up with 6 years you've lost and he's like a protective father saying hang on please take your time, you're trying to run before you walk, and there's no rush to do everything yesterday!

If it was simply a bad day for him then that is not fair or professional, you both are great people and have made a good team. You both have proved this. I would try not to judge him too harshly.

When you next see him, ask him why he reacted like he did and tell him that it upset and confused you and I'm sure things will be sorted out to your benefit. It would be so sad to break up a really good doctor/patient relationship over perhaps a simple misunderstanding which you both can discuss and put right.

With warm thoughts to you always,

Lynn

#18 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 03 October 2010 - 03:51 PM

Lynn, often there are posts on this forum that remind me that 2,000+ heads are better than 1, and yours sure goes to prove that. I may be wrong (I often am!) but I think you've gotten to the heart of the matter in considering things both from miocean's view and from that of her nephrologist.

I must say, I feel like I've been "off" the last few days in many of my messages. Do you ever feel like you just aren't thinking things through or hitting the right note, or just not accurate in expressing yourself? That's what I've felt like, whether it's been from being in a hurry or just being tired, or whatever. So I apologize to any and all if my messages have missed the mark (now, or ever)!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#19 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 04 October 2010 - 11:17 AM

Shelley please, please remember you ARE a sufferer just like the rest of us! You have nothing to apologise for, you give the best of yourself to us all and, we appreciate everything you do for us here.

Remember the old term from a great film "love means never having to say your sorry" and that is true. I hope you get some rest and try to be easy on yourself, okay, and recharge the Shelley batteries!!
:emoticons-yes:
Love to you and all,

Lynn :flowers: :emoticon-hug:

#20 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 31 October 2010 - 04:43 AM

Hi everyone,
I just wanted to let you know that my nephrologist, the one that I know and love, came back! :emoticons-yes: He walked into the examining room this week for my monthly and I said," oh, you're smiling today." :D He said he had a really bad day last month. All my labs are great and he said I could go to Mexico in January. He is really concerned for my safety and I told him I could get shot by going into two nearby towns.He said the safest place to be is in your own home but understands you can't be a hermit.

I have a feeling my gastrointerologist said something to him even though I asked him not to. I know they see each other around the hospital and talk about me. We all have bad days but shouldn't take it out on others, especially as professionals. I taught little kids for years and went through a divorce and the death of a parent. You couldn't pass those things on to them, it's not their fault, they didn't do anything wrong. Teachers always have to be "on." It's almost like performing. Doctors should be the same way. Patients get sicker, they die, it's not your fault or your next patient's fault.

Anyway, I'm glad to have him back. Thank you for all your perception into the matter. :thank-you:

miocean
ISN Artist