Home From Mgh Boston For Mitochrondical Workup

[tinkerbella]

I'm finally home from my trip to MGH in Boston for the workup for Mitochondrial disease. They made me feel like a celebrity, as everything was carefully planned by a team of doctors, as my neuro was leaving for vacation. The floor said they were not used to having someone with POTS, so I did have to fight a bit with the interns to educate them that you can't just pull all of my meds after years of fine tuning." NO worries," the head of the team would say each day and something else would be pulled and I would have to fight for while being as fatigued as I've ever been in my life.

Everyone was so nice to me...When I arrived to the OR for my muscle biopsy, they wondered if I was a celebrity under a different name. lol they said they hadn't had that much setup for someone for a simple procedure. I told them I was a STAR ~ lol We had a lot of pre-biopsy laughs and decided what was best if I did have mito. Seeing my mom had a hard time being put fully under, they changed the plan at the last moment. When I could feel the cut they gave me more and next thing I knew I woke up dreaming some crazy dream. Then itching like crazy needing bennadryl and ice packs to stop the itching from the pain meds they used.

I had no idea how big that incision was going to be, NO MORE mini skirts for me ~ lol I had this silly thought that I would have no pain. they had told me I had diminished everything and you can stick me with pins and I feel nothing. But stab me and I guess I still have FEELINGS ~ Very deep feelings ~ More meds please ~ When some doc came to check out the nice work done, he said you will need more meds than a Vicodin for that. So I asked, but none were written..... I was in lots of P A I N till the wee hours of the morn till the Docs on call could be reached. So make sure you have pain meds written on board before that take that muscle out ~ Thought I would never walk again, but yes I'm walking still in pain. Each day gets better.

While I was there they opened a whole new floor and I got transferred over. Each patient has a private room and they are very, very nice. My nurse had 2 patients so she was able to really help me out a lot ~ Next, on my agenda was my power port. I got a purple one ~ I like purple ~ For days I felt like I had done the wrong thing and had this foreign body in me that I wanted to rip right out. Day by day it get easier to get used to ~ I will now need more skilled nursing to help out with it ~ I had liked the new nurse that I had gotten just before I left for the hospital ~ I also had really liked the one I had before her. I have been through so many changes that it has been very hard on me.

They want me to come back to their ED clinic to see someone about my episodes at night. They think they may be fatigue and I should try to limit my computer use. Try to get in a better sleep schedule. If needed they will admit me and watch me under camera and do an egg for the episodes that I have been having.

While there they had me on holter monitors 3 of them for 72 hours, but impossible to fill out or really capture anything when I'm in bed all the time. On cardio machine for the nurses to monitor, I had already done the Blaird 111 cardio plummy stress test that came back neuro muscular and I had told them I couldn't do it again this time.

Well, If anyone has any questions, let me know? I won't know for sometime the results of the biopsy. The only thing I noted is they had me on IV potassium the whole time I was there mixed with sodium chloride. I usually take it by mouth. I've been craving frozen bananas 2 of them every day. I feel slightly better. Is it the rest, iv potassium, not doing my own IV treatments??? I don't know, was I low??? No one tells you anything because your doctor is not there. We shall see... Has anyone else had this all done before @ MGH or anywhere else?

Would love feedback if you have any ~

Boy, did I miss my friends ~

love ~

BellaMia ~

[corina]

great to hear from you bellamia and thanks for sharing your story! i have to say, you really ARE a star!!!

take care,

corina

[tinkerbella]

great to hear from you bellamia and thanks for sharing your story! i have to say, you really ARE a star!!!

take care,

corina

Awww corina,

You sure know how to make my day brighter than sunshine ~

thanks ~

<3

Bellamia ~

[lgtaylor100]

Hi Bellamia -

I am curious about what prompted your workup for mitochondrial disorder. (If you already posted that and I missed it, I apologize.) I'm curious about the chain of events that led up to this workup. What kind of a doctor suggested it to you?

I'm asking because I have lately suffered with weakness in my arms and legs and severe exercise intolerance.

It sounds like it was a tough experience and you got through it.

Hugs to you and I hope that something positive comes out of the experience.

Lynne

[tinkerbella]

Hello Lynne,

I was dxed with POTS almost 4 years ago ~ You can read a lot of my story on my about me page, but I'll fill you in ~ Just before the POTS dx I had a level 2 and a level 3 cardio plummy test @ MGH in Boston. the first was suggestive of Congested Heart Failure and the next on Neuro/muscular Disease. Just before that I was given a muscle biopsy in my left upper arm looking for Mathis gravis, it was thought that the muscle came back look like a type muscle, fybromyalgia and I alreadly had that dx a;ong with chronic fatigue.. Slowly I would find out I had many of the layers that made up pots, but as 4 year went by I got worse and the fatigue left me bedbound. I had gone from hydration in the hospital 2 days a week to now neding it daily 2 leiters. A simple trip out to the doctors in the am and I was asleep for the day.

Soon my body was having episodes @ night that were pretty scary. Head droops, hitting my head over and over again till told my PC and MY CARDIO and he told me the new work being done at MGH on MITO and POTS and the relationship with the failed level 3 cardio plummy test that I failed almost 4 years ago. ( I have read that other stress tests are not this invasive and give the same results ) I have havd other stress tests that tell me I am fine. My cardio believes MGH is where I need to have my stress tests, and now will not put me through this much stress as I told him I know I can not do it again. I honestly thought I was going to die when I went through the second test and they were so very , very nice to me.... I thought they were prepared for the worse.

MY CARDIO then sent me to a NEURO @ THE MOVEMENT CLINIC @ MGH IN BOSTON, WHO MADE THIS MAGIC ALL COME TOGETHER. I call it magic, because he LISTENED TO ME, said he was so sorry that my life was like this. Then tried to make the plans. I must send him a Thank you for making all of this happen

So, will this be the missng link to the puzzle? I don't know, and all I really want to know is if there is a gene in the family so that my children and my grandchildren could be treated earlier and saved from all the **** that I have been through. I need something right now, to make my Whole Family look at me before it's all too late ~ This is not a game , but the sand in the timer is running out. I LOVE my family so very much. I can't make them include me the way I yern to be included. They have there lives and mine is too complicated to even look at ~ I just have to start living my life alone, and accecpt the days I see them, cheridh the times we talk on the phone, as

D I A M O N D D A Y S as I'm told I S P A R K L E and L I G H T U P when they are all around me or talk to me ~

I WANT TO BE A SPARKLING MOMMIE AND NANNIE FOREVER MORE. I LOVE MY KIDS MY GRAND KIDS SO VERY, VERY MUCH ~

<3

BellaMia ~

[lgtaylor100]

Thank you for your quick and detailed reply. I am seeing a neuromuscular doctor at U of P in three weeks. Do you live in the Boston area or do you travel there for treatment.

I too feel somewhat alone in all of this. I do have my husband who has been wonderful, but my children are busy with their lives. I do get to see my grandchildren because I am still able to travel (one group lives only fifteen minutes away and the other about an hour and a half) to see them (with my husband's help).

Wishing you the best,

Lynne

[tinkerbella]

Lynne,

I'm Single but L@@king just West of Boston ~ LOL !!!

Love long walks on the beach in my wheelchair ~

I can drive, just choose not too, as I don't have a

vehicle that holds my motorized chair.

I have many mode of transportation,

walker, cane, all depending on where I'm

going and if they have a chair there.

I met a nice Doctor on the way to MGH last week.

I need to email him and let hem know how I made out.

I would love to start a local support group in the Metro West Area

of Boston, as I do believe that When you meet a Potsie it's like

meeting a long lost relative who really loves you.

I have 3 people already who want to be in a group.

Anyone else let me know ~

If I can help you our Lynne count on me. I'll put a link here

about mito with audio and slide shows to watch. Education

is the key to everything. So I would read up on all you can if

you think that 's what is up with you.

Email me anytime for any questions ~

xxx's

You are never alone here ~

http://www.mitoaction.org/files/awareness%20week-2011_1.pdf

love ~

Bellamia ~

[tinkerbella]

Mito Action

http://www.mitoaction.org/tips-and-tools-for-living-with-mito

http://www.mitoaction.org/energy-4-education

http://itunes.apple.com/podcast/mitoaction.org-podcast/id290467730

Some of these are for kids, but tomorrow is Mito Awareness Day ~

BellaMia ~ x's to all ~

[tinkerbella]

The itunes pod casts free lectures are wonderful to listen to. You don't have to subscribe if you don't want to. No sense filling up your computer if you can just listen for free ; ) unless you have tons of room.

TODAY IS MITO AWARENESS DAY ~ "WORLD STAY IN BED DAY"

http://www.stayinbedday.org/

Check it all out ~ L@@K and SEE ~

They are finding more and more relationship between POTS and MITO with patients who are exercise intolerant, but listen to the podcast for more details.

BellaMia ~

Edited September 20, 2011 by corina
removed unnecessary quoting

[sue1234]

That sure sounds like such an in-depth procedure. I would have never guessed that it would be so invasive! Hope you are mending well.

[tinkerbella]

Thanks Sue,

"I'm Sew and Sew so to speak" Trying to make to best of it ~

x's

bellamia~

[sandymbme]

Oh my goodness! Glad to hear you are mending so well! I had my new power port placed about three weeks ago (my last port ended up developing too much keloid scar tissue and just could not get accessed any more. And as purple is one of my wedding colors, I had to go with a lovely purple port myself!) and I have to say I am very, very happy with it. Recovering from surgery is less fun, and I have another one coming up October 5. But having the ability to hook up for extra fluids any time I am not doing well: priceless! We just swap out the needle once a week. Getting my port accessed is also less painful than peripheral IV, once it heals fully, which was why I was adamant about a power port. No more IV sticks for CT scans or MRI's with contrast! Hope you mend very soon, and get some really good info back from all this testing you went through!

Sandy

[tinkerbella]

Hi Sandy ~

We are in the purple port club ~ Mine is looking yucky ~ they came back today to give it another look over today. I was so bruised. tonight I was wishing they had placed it in a little different location. Oh Well, that's the way the ball bounces. I'm not going out and buying all new shirts. I was told it wouldn't show, but it does. Looks like a door bell ~ Ding Dong ~ I hope you are doing well. I didn't know these could scar also. I want to return to start and collect 100 dollars. Funny I got purple, as I can't have iv contrast dye.

BellaMia ~ x'xx's

[sandymbme]

Mine looked awful for the first week or so, but compared to my previous port has healed really beautifully! Hopefully one all the swelling goes down it won't be so prominent. A real down side of having EDS as well as POTS is that I heal badly, so I bruised terribly and had horrible swelling. As far as the port showing goes, I decided long ago that anyone who was put off by my port wasn't worth my time. I am happy to report that my attitude means I will be proudly displaying my scars on my wedding day next year, as I did indeed find someone who could care less about the scars. Anyone who is bothered by something so vital to stabilizing your health really isn't worth knowing! Hope you mend well!

Sandy

[tinkerbella]

Sandy,

I just love you and you other half is so lucky to have you ~

We are not our bodies anyway, we are what is inside our hearts ~

I think we have both been through a lot you Sweet Sandy Shell ~

I wish we could see you in your wedding glam ~

I Wish You Both Happily Ever Afters Forever and Ever ~

I saw my cardio this morning and he thought I looked better.

I said, it the makeup ~

He said, I was falling asleep last time.

We laughed about the antics of the interns and residents

and what they had put me through while my doc was away

the understudies will play ~

Told him I felt stronger on IV potassium than my pills. They had me on iv

pot in the hospital the whole time. I can't seem to keep potassium in me.

So, even though I have a port, I had to get a blood draw, as I don't have any

extra tips to replace after a blood draw. And if this company can't find me a smaller

back pack to carry around I may have to can them also. I looking for the: TKP 100 Bodyguard 1500ml Backpack

If anyone knows how where online this infusion bag can be bought?

It's the best size for us breathless potsies ~

Oh, wish I could go to this, My doc told me about this.... http://www.wickedlocal.com/chelmsford/features/x2046634537/Fundraiser-aims-to-ease-burden-of-chronic-illness#axzz1YhSvP5Wb

Awareness ~ Awareness ~ Awareness ~

Take care all ~

BellaMia ~

[Rachel]

Thanks for sharing about your experience, BellaMia. I hope that you will recover quickly from the procedure. Rest well.

Happy Mito Awareness Week!

Rachel

[tinkerbella]

Thanks Rachel HOPE you are well ~