Jump to content


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


Photo

PAH? Sympathectomy? I guess it could be worse...


  • Please log in to reply
20 replies to this topic

#1 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 08 June 2010 - 01:41 AM

I went for a follow up appointment yesterday with my rheumatologist. This past month I was wearing an event monitor because my heart has been racing. Back in '06 I had a cardiac ablation done to stop an arrythmia and some other issues. Now my heart races with little activity. I carry the laundry upstairs and it jump to 144 beats a min. Carrying in the groceries, 155 beats. The cardiology department did not send over the report so my rheumatologist will track it down and call me. I am being scheduled for a follow up PFT and echo. He wants to check the pressure on the echo and recheck my DLCO on my PFT. It has dropped from 53 to 40 so he wants to make sure it is accurate.

I have been suffering with ulcers for years. Sometimes I can go months with none and then I will have a handful. Right now I have 3 and another one almost healed. I have been in studies for new meds...always the placebo but get the regular med after. The last med I was on the side effects were so terrible I couldn't take it. I have been on viagra and cialis with headaches and light headedness. I can tolerate 5mg a day but still no help with the ulcers. My rheumatologist recommended I see a hand surgeon to discuss a sympathectomy. Currently one of my ulcers I have had for almost 4 months. Hopefully I don't have to wait too long for the appointment. I guess it could always be worse...

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 08 June 2010 - 02:53 AM

Hi Lisa,

I'm sorry you aren't doing real well. It sounds like your doctor is on it, but boy, having to wait for an appointment with a consultant can be really frustrating. From what I've read on the Forum, a sympathectomy seems to work well.

I think the rapid heart beat you get carrying groceries in or the laundry upstairs is your body trying to tell you something! "Don't do it!" This is why we have kids.... :)

I actually cried uncle this last week and yesterday my son-in-law who isn't taking classes this summer came over and mowed the grass, strimmed the hedgerow flowers (also known as weeds), and hauled nine (9, count 'em) packing boxes of books upstairs to my newly refurbished office/workroom! He needed money and I needed help. It was a win-win situation.

There's no shame in asking for help when you need it, Sweetie. :blush:

I hope things improve soon. Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 08 June 2010 - 03:35 AM

Hello Lisa

Yep, it could always be worse! That's some heart rate, mine went up to 220 and stayed there until medical intervention, it was not a pleasant experience. When your heart races you feel somewhat helpless because you can't do a lot about it and you do wonder if it's a serious problem. Whilst I await my pacemaker(s) I was put on beta blockers to lower my heart rate but I assume that's not an option because of your Raynaud's. I've never had an ulcer so can only sympathise and I do hope you get the appointment through soon and that the procedure is successful.

Whatever the ECHO shows is not necessarily the be all and the end all as I have discovered, even if the results are bad it's not the end of the world by any means. Pleas keep us informed and take care. :emoticon-hug:
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)

#4 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 08 June 2010 - 03:48 AM

Hi Lisa,

I'm sorry you're dealing with all of this right now. You are always so upbeat, that sometimes I forget you have Scleroderma! I can totally relate to the racing heart issue. It's what I've been dealing with now for over a month or so. My EKG, ECHO and lung function studies were abnormal, in addition to my holter monitor. Evidently I'm having "pauses" that are lasting 4.8 seconds. According to my primary care physician, when the pauses are 5 seconds, you're a pacemaker candidate. Anyway, I see the cardiologist this next Thursday, and will have a nuclear scan, and he'll determine whether I get a heart cath at this time. All a little scary for me, because this is my first heart and lung involvement.

Anyway, sorry I didn't mean to make this about me, I just wanted to let you know I understand, and you're not alone! :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 08 June 2010 - 04:36 AM

Hi Lisa,

I'm so sorry you're having so many problems!

Jeannie is right-- kids, and especially husbands, were created to carry heavy things. Ask them for help! You do so much for everybody else--it's good, not bad, to let other people help you too.

It's good to hear from you and to be able to give you support, for a change, instead of the other way round.

Hugs,

warmheart :flowers:

 



#6 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 08 June 2010 - 02:51 PM

Hi Lisa,

My goodness gracious, you have so much to deal with at once. My heart goes out to you and here are some flowers.
:flowers:
Have they said what they can do for your heart rate, yet, or do they need to wait until all the tests are done to decide anything?

Digital sympathectomy wouldn't be any fun at all. I'm sure you've seen our page on photos of digital sympathectomy but others may find it enlightening. What I found fascinating is that it is day surgery, as it sounds like it would be so much longer or more intricate to do. However, it looks like it would definitely put a dent in your soccer game, and my guess is the family might as well get used to coming to the rescue now on laundry and groceries, etc. so they are mentally prepared for your post-surgical recovery.

Here are some extra warm hugs for you! :emoticon-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.

#7 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 08 June 2010 - 03:24 PM

Lisa,
Thanks for catching us up on what's going on with you and yes, if anyone should know - it could be worse. You've been there. Sounds like you've given up on clinical trials for the digital ulcers, but then zero out of four being effective isn't a good record. So viagra and cialas have worked the best for your ulcers? Now if you could just get rid of the side effects.

It's going to be interesting to hear what your cardiologist report says. I hope between the monitor and the pulmonary tests, you can find a reason for your high heart rate. Let us know what you find out. In the meantime, take care of yourself and, if possible, try to take it easy.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 LisaBulman

LisaBulman

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 09 June 2010 - 12:32 AM

Thank you everyone for all of your kind words!!

As for my heart, they are not 100% sure what is going on yet. They do want to get the full cardiology report from my monitor and see exactly what is happening. The reason for the echo is to reevaluate my pressure. It has always been "borderline". Hopefully that will be a quick fix with a med I can actually take.

I really don't like surgery but if I can get my finger, maybe two or my hand (hopefully) fixed, I would do it in a heart beat. The pain is excruciating and simple tasks are no longer simple. I know that if I have the surgery I do have options for around the house. Having my husband go grocery shopping is not one of them! It is always a disaster...he impulse buys and then we only get half of what was on the list. I'm going to have to go back to online shopping and have them delivered. Summer is coming so my kids can really live in their bathing suits. Who needs clothes anyway?!

I will keep everyone posted...

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#9 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 09 June 2010 - 05:54 AM

Lisa, I had to smile when you said having your husband do the grocery shopping is always a disaster. It's that way around here too. At one time we had 12 pounds of butter in the freezer (!), 3 dozen eggs in the refrigerator, and 3 gallon-and-a-half jugs of chlorine bleach~ Deary me....:wacko: There are only the two of us at home these days and I don't do 'bed and breakfast' either!

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 10 June 2010 - 10:07 AM

Lisa, I have to confess. I'm like your husband when it comes to shopping. I veer off the list and get all the extra (often totally useless) stuff instead. My husband is perfect at shopping though -- he sticks to the list and never strays outside of it, which puts the monkey on my back to make a good list in the first place.

Definitely, two thumbs up on using grocery delivery services...unless of course they are your thumbs and they have ulcers on them. Plus you know, kids can always use the exercise to carry and help around the house, even if they need to use smaller baskets or step stools.

One good rule to live by: always ask for help if you need it and never turn down an offer of help!
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 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 14 June 2010 - 07:55 AM

Hello All

I have to get in on this! My beloved is not the best shopper in the world and has been sent out for items including 2 onions and has come back with steak mince instead! Mainly I shop online and have it delivered but even then you can end up with substituted items. Why can't everybody be as perfect as me? :lol: :lol:
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)

#12 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 14 June 2010 - 10:16 AM

Well JJ - I guess we're 2 of a kind. In this house, it's also me who is the impulse shopper. My husband takes the list very literally and buys ONLY the items on the list. That's a problem, because I'm incapable of making a complete list of what we really need. Grocery shopping is the only shopping I like to do, so I usually browse the aisle looking for the things that I truly NEED. Of course this leads to buying a whole lot of stuff that I don't need, like chocolate, cookies, malted milk balls (yummy!). For 2 people we have a pretty high grocery bill. My rationalization is that since I don't buy clothes but once a year, never buy make-up, and we hardly ever eat out, I can spend more on food. Don't you just love those rationalizations? :VeryHappy:
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#13 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 16 June 2010 - 11:57 PM

Hi Lisa,

How are things going for you? Have you seen the hand surgeon yet?

Sending warm hugs and flowers your way. :emoticon-hug::flowers:
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.

#14 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 18 June 2010 - 04:08 AM

Hi Lisa,

Yes, how are you, and how are things going? I've been thinking of you and wondering too.

Hugs,

warmheart :flowers:

#15 LisaBulman

LisaBulman

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 20 June 2010 - 02:18 AM

Still waiting for my appointment info. It usually does not take this long.... Hopefully it will be soon. My fingers are killing me!!!! It seems like they quite down and are on the mend then a few days later get worse. UUGGHH

Thanks for asking!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#16 LisaBulman

LisaBulman

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 25 June 2010 - 01:27 AM

On Wednesday I had my appointment with the hand surgeon. First I met with the the physician's assistant (PA), Jeff. He was really nice. I was sent for X-rays and then went right back to the office.

The doctor looked at the X-rays and then came in to meet me. He examined my hands and explained the procedure. I asked him about a sympathectomy that my friend had done around her shoulder. Basically they go in and cut the nerves where thye leave the spinal cord. It is much more extensive and done under general surgery. He wasn't sure if anyone at that hospital does it but he said he would look into it. I really don't want to go that route after he explained it to me anyway.

So for now, I have to have an arteriogram done on my wrist to rule out any blockages. As long as that comes back fine I can go ahead with the suregry. He said from his perspective it is a simple surgery that he has done many times but it it surgery so there are always risks. I said I was willing to take the risks because I am miserable with warm weather, the cold weather is just around the corner!!

Now I am waiting for my appointment for the test... woohoo!!

Oh, I almost forgot, he will make an incision on each side of my wrist and another one across my palm. When we are done, hopefully I will have a smiley face, or maybe a jack o lantern crooked smile, either way it will be fun to look at!

Hugs,

Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#17 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 25 June 2010 - 03:57 AM

Hi Lisa,

Thank you for explaining the pre-surgical side of it. I hope you don't have any blockages and can have the sympathectomy.

You'll have to take pictures of before and after for our main site. If you tell your surgeon you'll be doing that and that you have a special request for a cool looking smiley face scar, perhaps he'll oblige and spare you the jack o lantern version. :blush:

Here are some delightful pre-surgical flowers for you, in hopes they have you feeling better, rather soon. :flowers:
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.

#18 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 25 June 2010 - 07:00 AM

Hello Lisa

I do hope you have the surgery sooner rather than later, I'd go for a smiley face myself :VeryHappy: something like that!

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)

#19 LisaBulman

LisaBulman

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 25 June 2010 - 07:07 AM

Just got a call from the hospital. They have booked my ct angiogram for Monday afternoon!! Wow that was quick!! My follow up with the surgeon is on July 19th. This date is actually perfect because at 9am I have an echo, 11am pft, 1pm my rheumatologist and 2pm the surgeon. I should be loaded with information after a day like that!!!

Hugs,
Lisa

PS Shelley I will definitely take pics and hopefully it will be a smiley. :D
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#20 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 25 June 2010 - 10:12 AM

Wow, that's service! Please let us know how your angiogram goes, too, Lisa.
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.