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miocean

Celebrating for Different Reasons

27 posts in this topic

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

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

 

Thank you for the update!

 

Erika

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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)))

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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

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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)

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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,

Pattythank-you.gif

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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 =)

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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:

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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

International Scleroderma Network (ISN)

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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

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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

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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.

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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)

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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.

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