Sign in to follow this  
Followers 0
miocean

Celebrating for Different Reasons

27 posts in this topic

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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:

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Miocean, at least you have a way out of your tickets if you so choose. Your doctor's don't want you to go and you would automatically get a full refund. Now, Hawaii was mentioned. Why not Hawaii? Everyone speaks English and or Hawaiian, and it is safe. I went on two vacations of great distance in the past two years. Both vacations were awesome. One to Mexico and one to Costa Rica and the Panama canal. I ended up sick from both trips. Buying food in Mexico from a street vendor got me a bit of stomach upset. Buying a refreshment made with their water I would guess also made me ill. My trip to Costa Rica I picked up a bug and was on medication for over three months trying to recover. So, I think some places are best left to the peoples whom thrive the best there or for people with great immune systems. I for one am no longer traveling places that you have to worry about what you eat or drink. Or about parasites or other insects that can cause our bodies great bodily harm. I hope you enjoy your trip if you go. I will wrap you in a hug and hope it keeps you safe.emoticon-hug.gif Let all of us know of your decisions and how you fare a month or so after your trip. Sometimes parasites take that long to attack and weaken our systems. After what you have been through you deserve to get on with your life.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Sheryl,

 

Interestingly, when I read up about parasites, one of the places it mentioned picking them up was Hawaii! I am very careful in Mexico with what I eat and drink. Only bottled water and purified ice, no fruits or vegetables, NOTHING off a street cart. Preferably bottled drinks opened at the table.

 

Oddly, I was in Costa Rica right before my scleroderma symptoms started. My chiropractor was convinced I had picked up a parasite. I went to two infectious disease specialists, had all sorts of tests run, my chiro even contacted a doctor in Costa Rica and asked, based on my symptoms, if I could have picked up anything. Everything was negative.

 

No place is safe. There are bed bugs. Dust mites. Legionaires disease. Terrorism. Violence. Pick pockets. Drugged drinks. Germs are everywhere, even in your own home no matter how clean you keep it! I think caution wherever you go is vital, but not to become completely crazy about it.

 

My husband has given up so much for me and has done so much for me and he really wants to go back to Cabo. I'll be careful.

 

Thanks for your suggestions and concerns.

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Miocean,

 

Have fun where ever your travels take you. Sounds like you are taking everything into consideration. I've never been to Cabo. Anything special there that is a must see? My son is going in February I believe. May the winds be at your back.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Miocean,

 

I'm delighted that your labs are great and you have the approval of your whole medical team now, for traveling to Cabo.

 

I'm not sure, but your doctor might be wrong about the safest place to be is in your home. I thought I'd heard once that more people die in their own bathroom, than anywhere else? Which is a good reason you should spend a lot less time at home in the bathroom and more time on the beach in Cabo, right?

 

I hope you stay well, stay safe, and have a truly marvelous time!


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.

Share this post


Link to post
Share on other sites

Dear miocean,

 

You sure are a great inspiration to all of us, your truly a great inspiration to me, your stories sound so much like that of my sister, several times we almost lost her, and somehow she pulls through, just when we think all hope is lost she proves us wrong!(thank goodness). Never, never give up!!! You are to be greatly admired!!! Thank you for sharing your stories!!

 

Best Wishes!! Always!!

 

Sincerely,

northstarhope :thank-you:


northstarhope* :emoticons-i-care:  :thank-you: 

Share this post


Link to post
Share on other sites

Hi, Miocean

 

 

Just wanted to tell you that I have a sister-in-law and her best friend, of who spend half of the year in mexico. they love it there!! I just wanted to wish you a very happy time and safe trip!!

 

sincerely

northstarhope :bye:


northstarhope* :emoticons-i-care:  :thank-you: 

Share this post


Link to post
Share on other sites

Hi miocean,

 

May your trip to Cabo be the very best you've ever had and your time spent there...the same as your trip :emoticons-yes:

 

We look forward to hearing all about it when you return (after a good rest, of course)! ^_^


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0