miocean

Doctors, doctors and more doctors..... woe is me.

22 posts in this topic

Hi Miocean,

 

Thanks for sharing your update.

 

I can see the benefit of using a concierge service (pity it's expensive!) As you do have so many medications and consultants to deal with (remember you're our 'ologist winner!! :lol:) perhaps it might help you and relieve some of the stress you're experiencing. Worth a thought anyway! ;)

 

I'm so glad that you're feeling better physically and emotionally; as I've said before the best thing about this bizarre disease is the fantastic people I've got to know through having it! :emoticons-yes:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

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ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Almost a month has passed since my last post on this topic and it has been a very good month. Summertime has brought a lot of company and family visits, fortunately for me not staying at my place as my sister-in-law has a huge house. We went on a road trip that totaled 2,400 miles over 10 days, I have been swimming a couple of strokes in the ocean and seeing very few doctors. Although I have become tired, it is more the usual way people do, not the all out crashing that has happened in the past. I have also been pacing myself and taking time to rest.

 

The appointment with my transplant center is coming up next week. Here is my dilemma :emoticon-dont-know: :

 

I feel great. :yes: My labs are great. I have solved the majority of my issues with my doctors. The only concern I have is the rise in cholesterol, more than likely medication induced. My therapist advised me, based on all of this, to take the stress out of going back to the transplant center and to think about canceling, and to see if I could get some advice about the cholesterol over the phone.

 

I called today and was told if I cancelled I would not be able to get back in until the end of September. They are holding the appointment open until I speak with the social worker who was unavailable today. I left a message but it takes her a while to respond. I will repeat a call tomorrow. I feel so good and do not want to waste everyone's time to be told everything is fine.

 

I had a appointment with my pulmonologist today and everything is stable. I see my scleroderma specialist and nephrologist and have labs in September. So,,,any advice?

 

Thanks!

 

miocean

 

P.S. I am using Safari and have access to the forum with emoticons, fonts, etc. Thanks for fixing that issue!


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Hi Miocean,

 

I'm so pleased to hear that you're feeling great and that your labs are also great and that you've been having such a lovely summer.

 

I can see your dilemma as far as your transplant appointment goes, but I think I would be inclined to keep the appointment, even though you're feeling so good at the moment. I'm sure you won't be wasting anyone's time, even if you're told everything's hunky dory; it's only the stress that it causes you that makes me suggest that perhaps you should wait for the social worker to get back to you and then see what she advises, especially as you have got appointments with your scleroderma specialist and your nephrologist coming up next month.

 

For myself, I always tend to do exactly what my Brompton consultant advises...(if she wanted me to stand on my head whilst singing the UK National Anthem I would!! :lol:) but I do have a lot of faith in her advice! ;)

 

Do let us know what you decide. :)

 

Best wishes,


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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Hello mio,

 

I guess I think that it is only fair to let your doctors know when you are feeling well too. If they never get any good feedback then life could be fairly bleak I would think. However that is just how I feel, I don't get stressed by all this stuff, in fact I quite look forward to our chats. Of course that is only meant to include the ones who are not egoists and can't see past their own nose!!

 

I have my annual chat with the Rheumatologist on Thursday and am quite looking forward to telling him that in spite of the bad start to my year when I was in hospital for days on end, I am now feeling better than ever.

 

Take care and try not to sweat the small stuff.

Love and best wishes

Judyt

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Hello Miocean

 

Maybe I am missing the point but why wouldn't you go? There's no requirement to only have bad news to report to doctors, if all you have to say is "I feel great!" that's allowed! They might sign you off from their service and wish you well. Last time I saw the cardiologist all I had to say was "I feel great!" and they just signed me off. That's allowed.

 

Take care.


Amanda Thorpe

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I spoke with the social worker at my transplant center and she cancelled the appointment and agreed it was not necessary for me to come in with everything going as well as it is. She was happy to hear I was doing so well and that I had found a therapist to help me cope with things. She said I could be a model for transplant patients because I had a very successful transplant (almost 2 1/2 years now, can you believe that!?) and knew to seek help and answers when I needed to. She assured me they were always there for me whenever I needed them.

 

Just to clarify things, unlike most transplant patients, I have never been back to my transplant center. The last time I saw my transplant doctor was when he came in my hospital room and said I was going home. The center has a working relationship with my doctors here so I was immediately turned over to them and have had all my labs drawn at a local branch hospital. That has saved me endless time going to and from the center. If I had my transplant at one of the other centers I listed at I would have had to relocate there for months and then go back a couple of times a year, costing a lot of time and money to travel. My nephrologist has consulted the transplant nephrologist when needed and they will be getting together to figure some things out with my cholesterol in the future.

 

The social worker did tell me that some patients return once every year just to check in because they feel a closeness with those involved. I don't have that closeness. If I had known that from the beginning, I would have gone once a year but at this point in my life I am trying have "Medically Free Days" with really good success.

 

Judy,

I am happy to hear you are feeling so good! We can get through those really dark times and come up smiling!!!

 

miocean


ISN Artist

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Hi Miocean,

 

I'm glad you were able to save yourself a visit to the transplant center. If it were closer though, and less expensive, it would have been fun to have a celebration visit! At Gene's two-year post-transplant visit, he got put on what I call the "well baby list", with a reduced schedule of follow-ups. It was really wonderful to have a fun and celebratory visit, after all the grueling stuff post-transplant. However, Gene was going to the transplant center for over a decade so of course there are a lot of close relationships there.

 

Since you won't be celebrating with your transplant team, perhaps you could arrange a special celebration for your two-year mark. It'd be a marvelous excuse for a dinner out, wouldn't it, with a virgin cocktail to toast this major milestone?

 

Major congrats!

:emoticons-line-dance:

 

:emoticons-group-hug:


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.

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