Any spouses/significant others of VHL patients here?

I don't know if this discussion board is mostly for patients, but I've been really stressed lately, and a friend found the site for me and told me I had to join or she was going to email someone for me, LOL.

Anyway, I'm looking for other spouses/significant others to connect with. My husband has VHL, which I knew when I married him. I "knew what I was signing up for," so to speak. But you can't really understand what this means, let alone what it will mean when you have children, when you are 21-years old and in the first flush of love.

Although I should also add, right off the bat, that I have NO regrets. We recently celebrated our 10th anniversary, and I reflected on what we've been through as a couple, and I realized that in many ways, his health struggles have made us much stronger. We've learned to understand each other on deep levels that I think most couples don't achieve until much later in marriage. And we've learned that we can weather any storm together - no matter how big. I love him with all my heart.

But does that mean this is easy? No, of course not. The last two years have been easily the most difficult of my life. There have been other big things going on exacerbating all of this, but the center of this particular storm has been our struggles with my husband's health.

When I was pregnant with our youngest child (after two years of trying! it should have been a joyous time...), not only did they find his first brain tumor, but also his one remaining eye (his been blind in the right eye for almost 5 years now), which had always been in good shape despite the fact that there were tumors in it, began declining rapidly.

When our son was 3 months old, he underwent a vitrectomy. That turned out pretty well, and by the summer of 2007, we were feeling pretty good that all was well. The one problem was a cataract that had developed and wasn't resolving itself, so in June 2008, he had a cataract removal, and that's when things really started going downhill.

Well, that's not entirely true. The removal went fine, and it was truly a "walk in the park" compared to other surgeries he's undergone. But just as he was getting back to driving again, at the end of July, there was a sudden and dramatic detioration in his vision. Off to his retinal specialist we went and...another detachment.

So in August 2008, he had another vitrectomy. The recovery was even tougher this time, with much more inflammation and the development of some sort of scar tissue that collected at the front of the eye. Fortunately, that was easily resolved with an injection, but it was still a harder recovery than the Jan 2007 surgery.

Again, all seemed OK for a couple of weeks. He went back to work. And literally the same day, his vision deteriorated dramatically again. I'm sure you see this coming - another detachment. Compounding this was the fact that we then got the results of his latest round of scans and, after 4 years of no growth, his kidney tumors are growing again and nearing the size that will necessitate surgery.

So there's a good chance he's going to need 2 more surgeries in the first half, or even the first quarter, of next year. To say I'm stressed is an understatement. Of course, the biggest concern is just his overall wellbeing - his mom was widowed when DH's dad was only 39, and that's just 8 years off for my DH. That is scary enough.

But in many ways, that's also the least concern b/c, right now, nothing seems life threatening. Rather, it's just the stress of getting through the everyday. We have two young children, and each surgery means that I end up almost a single parent temporarily. Also, he can't help around the house as much as he used to, and I'm no Martha Stewart as it is - we've always worked very much as partners around the house, and I find my control over it when it's just me slips steadily. I just get overwhelmed, which paralyzes me, and nothing gets done. I've also had to take over our bill paying, which used to be his arena, and although I'm perfectly competent, it's still just an added duty. And, as I tried to work my way into his system last August, a few bills slipped through the cracks. They shouldn't hurt our credit dramatically, but we've always been very careful to maintain good credit, so it bothered me nonetheless.

Plus, we're not in the best financial situation anyway (we live in metro Detroit - it ain't pretty here, to say the least) and I worry about even the smallest credit hits like that. Because one BIG issue facing us right now is that we live 35 miles, one way, from his office, and that's simply not doable when I'm needing to drive him in (fortunately, I work with him, and although I'm supposed to work almost entirely from home, I've been working from the office a couple of days per week so I can take him in) or he has to take the bus (nearly 2 hours each way, and after dark, he can't see well enough to read the bus numbers). We NEED to sell and move closer to where he works in the city. But we can't. Nothing is selling here, and we're upside down on our mortgage anyway thanks to how prices have plummeted. And we fear our credit taking any hit because that will just make a future move all the more difficult.

Topping everything off is the fact that our son just turned 2, which means it's time for us to have him tested. This waiting - first for the appt, then for the results - is just the worst. There is a perpetual knot in my stomach. If it is hard walking this road with my husband, I can't even imagine walking it with my child, too. The mere thought has led me to tears more than once in the last couple of months.

And topping all THAT off is the fact that my mom just had a stroke or some other unidentified neurological event last weekend, a couple of weeks after losing her job, and my dad may lose his job soon, leaving them with no insurance b/c his company is so small that they don't qualify for COBRA. And I may be out of a job myself as of 1/1.

I can write all this fairly calmly, but in honesty, I feel like I'm barely holding myself together. And most of the time, I feel really alone - no one I know has any idea what it's like to have a spouse with VHL or even any other severe chronic condition. They all offer their support and prayers, but it's not the same as a truly empathetic ear. Which is why, after a recent near breakdown, my friend tracked this site down (actually, my DH knows about the VHLFA, but I don't know if he knows the message boards exist) and insisted that I talk to you all. She said I need advice from other people going through the same thing, and I know she's right.

So, now that you all know what I'm going through right now - I'd greatly appreciated any advice you have from going through it yourself. How do you get through times like this when it seems like everything is happening at once? Have you ever found an effective face-to-face support group? How do you make TIME for one? I feel like between shuttling my DH around, shuttling my kids around, and doing my own job (which is only about 20 hours/week, but still keeps me very busy), I simply don't have time. And I don't know if it would be worth it to me. I envision caregiver support groups as a bunch of retirees whose spouses have cancer or something and can't really relate to me, as someone who still has a very young family. (Also, clue me in - are support groups free, or how much do they cost? Money is a huge consideration for us.)

And most of all - how do you deal with the guilt about feeling so overwhelmed? I have a feeling I'm not alone here, but maybe I am - I feel so bad that I feel bad! After all, I'm not the one who is sick. I don't face losing my vision. I don't face having cancer spread throughout my body from metastic kidney tumors. I don't face brain surgery. And I don't face never seeing my kids grow up. I feel like, who am I to complain? How dare I? And I certainly can't bring myself to talk to him about all this, the one person who might sort of understand.

OK, I'll wrap this massive post up. I am brand new to this community, so if there are previous posts I should read or other resources on the site I should know about, please point me at them. I'd deeply appreciate it.

If you've stuck with me for this long, thank you...

By TinaDiane
Posted December 19, 2008 at 12:16 pm
Report post

Michelle,
WOW! First of all, you are not alone. All of us here understand COMPLETELY what you are going through. Those of us with VHL, have had relatives or children that have VHL or other chronic disease that we have also watched, waited, prayed and worried over. I am also rather new to this web site, and turned here when I found out I had more VHL possible involvement in my lungs (as if the pancreas, kidneys, adrenals, spine were not enought!) Everyone here has helped in many many ways.
Finances are bad everywhere. I live in Oregon but am from Michigan. All of my family lives there and I know first hand how bad it is there. Keep the faith.
My husband and I bought a GM dealership here and moved here a little over 2 years ago (seemed like a good idea at the time...) and we are in a similar situation to yours. I have learned to break all of the problems down into manageable blocks and take baby steps. I also have a gratitude journal I keep and somedays I'm grateful for just waking up and walking.
We are here for you. I really don't have any REAL
concrete advice for you but wanted to reach out for you as soon as I read your post.
You are in my prayers,
Tina

By TJ7334
Posted December 19, 2008 at 2:32 pm
Report post

Michelle:

Keep in mind that life gives everyone their own set of challenges. All any of us can do is our best. Try to stay healthy and strong physically, and take time for yourself in order to stay strong mentally. Plan for the future, but tackle today a little at a time...day by day. Tina was wise when she said "break all of the problems down into manageable blocks and take baby steps."

Hang in there. You're in our prayers.

TJ

By FranMott
Posted December 19, 2008 at 5:07 pm
Report post

Hi Michelle:

You are going through a lot and it is completely normal to experience the feelings you are writing about. You've come to a good place to find others who know exactly what you are going through. A nice thing about finding us here is that you can express your fears and concerns at any hour of the day, when you are able to find that minute of peace and privacy. You can share with us and you will find an out-pouring of support from all of us who have been in your place, or are in the same situation right now. We all learn from each other and can share what helped each of us cope during difficult and stressful times as caregivers, as well as the problems and fears we’ve faced wondering if our children have VHL.

I know that free time is a scarce commodity for you right now, so I welcome you to call at any hour of the day or night. I’m the VHL Family Alliance Michigan Chapter Chairperson and I’m here to help you in any way I can. All VHL patients, family members, friends and physicians are welcome to contact me at any time at the numbers below. I look forward to talking with you.

Fran Mott
Tel: 248-887-8617
E-mail: us-mi@vhl.org

By larryinpa
Posted December 20, 2008 at 11:03 am
Report post

Michelle -

You are not alone. Welcome to the best place for VHL support! It is not just for "patients"....we are all "family" here. On this site you will find people to talk with about anything. (Past discussions are saved, so you can look around for what interests you.) On the vhl.org site you will find extensive reference material.

My advice is to start with the guilt. You are not guilty! Your head knows this....but you still feel guilty. It is a very human response. Caregivers are as much a "victim" as the VHL person. Your whole life is being consumed by events that surround VHL. So you are allowed to be overwhelmed. We all forgive you. Please forgive yourself.

We understand how helpless you can feel when one crisis piles on top of another....how a parent feels responsible for the health of their children....how VHL creates all kinds of other problems, like insurance, jobs, transportation. But most of this is OUT OF YOUR CONTROL. So you have to focus on what you can control - and let the rest go from being your responsibility.

The problems don't evaporate. But the guilt does. It makes your day more manageable. Less stress. Even when bad things are happening.

As to what is out of your control, we have to accept what happens. Living in metro Detroit makes some problems bigger.....but they are shared by millions of others in the US, and even worse in places around the world. Jobs, insurance, housing -- none of that is as important as your family. The American Dream is changing. Life goes on. Do the best you can.

My last thought is this....you need to keep some part of you intact. All of your time is given to your family. I encourage you to find something that is just YOURS. At least once a week. Reading? Walking? Piano? Writing? Night out with a friend? Something! It will re-energize you, de-stress you, and preserve a beautiful person.

I always feel inadequate giving advice to someone else. But at least please know that you are now connected to a support group that understands, and cares about you. Hang in there!

Larry

By picko
Posted December 21, 2008 at 7:56 am
Report post

as a sufferer of VHL i have never looked at it from the other side and i must say you have made me realise how much our partners have to put up with. I have had surgery been hospitalised for 10 days the wife will not drive but traveled 24 miles every day on public transport to visit me and nursed me for 3 months after, your story has touched me very deeply and feel very sorry for your position, I am in the uk and it's just as bad over here but your husband need you to be strong i hope your kids are fine, both mine were positive so now i have to look after them they are both grown up and left home but they still need looking after.
GOOD LUCK FROM THE UK

By joyceg98
Posted December 21, 2008 at 2:39 pm
Report post

Hi, Michelle. We're so glad you found your way here! Of course you are welcome -- this list is for anyone affected by VHL -- patients, family members, friends, etc.

What a wonderful set of replies already! And great advice. About caregiver support, I would start by calling the hospital where you go, and ask someone in the Social Work department about groups there. They are usually free, and will have people of all ages. Tell them you particularly want to meet with others of your own age, who have children too. It's not as uncommon as you think!

What helps me when I get into that "overwhelmed" situation is to sit down and take a few minutes to make a list of the things I REALLY have to get done today -- not the whole list of things I "ought to do", but the short list of things that can't be deferred for today. That will usually bring it down under ten, possibly under six. Then focus on those few things and knock them off.

If you can simplify your life it sure would help! Instead of commuting, is there a friend one of you could stay with periodically to eliminate a commute or two or three? Ask your friends and relations for what you need. Could someone else watch the kids once in a while? or cook a meal? or drive? If you don't ask, you don't get. Give them the privilege of helping you.

Fear is always there -- for both of you. Let's see if you can get that at least under control. There are lots of unknowns ahead. What would be the best way to reduce your fear -- to get you to a point where you feel you have done your homework, and the risks are at least manageable? You might talk that one over with DH and make a plan together. Clearly the eye is the more urgent problem right now.
- kid testing is deferrable unless postponing it would add more stress for you.
- kidney tumors should not be ignored, but need to wait if possible until the eye is under control

Fran is a great person to discuss this with. You might even want to do a 3-way conversation with her to make up a plan.

So that's my two cents, echoing much of what others have already written:
- one bite at a time
- breathe away the guilt
- your stress and feelings are important too!
- courage is doing what you need to do even when you are fearful
- make a plan to give yourself some control
- ask others around you for what you need.

I hope that helps a bit.

Much love to all,
Joyce

As Larry says, you don't need any guilt. You have already done a great job, and I'm sure you will continue to do so. See if you can do some focused breathing exercises and breathe out the guilt. Just sit quietly (with a sleeping baby is the best!) and breathe in through the nose and out through the mouth. Just close your eyes and listen to your breathing.

By Kim1975
Posted December 21, 2008 at 10:38 pm
Report post

Hi Michelle,

I have VHL and faced my first surgery at 18. During that time, my dad reminded me everyday, for many months, during my recovery that "God will not give us more than he knows we can handle." I remind myself of this daily, 14 1/2 years later. When you are feeling overwhelmed, take a minute and remind yourself of the same. All of what we go through make us stronger even if it seems it may break us at the time.
I understand the worry about the babies. Our oldest son, who will be 15 in March, tested positive for VHL. I worry what the next few years will bring for him. I just hope and pray he is like my father, no surgeries until he is 58 or older. We have not tested our 11 month old. I am not ready.

I will keep you and your family in my prayer.

Take care,

Kim

P.S. You are doing a great job. Take one day at a time.

By lindajo1969
Posted December 26, 2008 at 8:45 am
Report post

my husband had vhl he passed away from it on 7-4-2004 my son have vhl he turns 18 in a few days he has had eye surgery like 8 of them but other than that hes good

By lindajo1969
Posted December 26, 2008 at 8:51 am
Report post

im sort of like you to e-mail me and we can talk lindajo1969@aol.com we live in ypsilanti mi not to far from u what dr. do u go to

By joyceg98
Posted December 28, 2008 at 6:00 pm
Report post

Just a quick reminder - it's best not to post your real e-mail address here. You can send a private message to another member and put it in that private message. Putting it in this more public space makes it available to spammers, and you don't need more spam! :-)

Best wishes,
Joyce

By BriannaB
Posted October 9, 2009 at 10:43 am
Report post

YOu are really not alone. Like you my husband has VHL. He was diagnosed about 9 years ago when our oldest son was only 10 months old. He was having massave headaches that were bringing him to his knees. Finally I convinced him to go to the hospital, and after they gave him a c.t scan they found 2 tumors. At that time we didnt know it was VHL, they operated, and sent it all off...It was actually quite sometime before we finally got the diagnoses. Scarry to say the least, Because at that same time is when we found out we were prego with #2... My brother in law as well has been diagnosed with the disease, and he, like your husband has had major problems with his eyes, he is legally blind in one as well.. Things were actually pretty good for about 8 years, tumor free and living life.............
Then, BAM it stikes again. This past feburary my husband underwent a very long very extensive Brain operation. 10 hrs in the O.R, 2 days intabated,almost 3 months on a feeding tube, and still he has a numbing feeling on the right side of the lower half of his body. But he has come out of it pretty good, and is back to work... We are going back to the specialist on at the end of oct as there is another tumor that they are watching,but the surgeon would like it to be bigger before they operate. So I guess we will see, Hoping it hasnt grown.
Im telling you all this because i really connected to your story. I totally know how you feel. Its hard on the people who have it, but its hard on us as well. Its a lifelong battle for the both of you, and wiith children involved, its 100 times more scarry. Like I said its streesful. Because even when were not all worried about my husband were worried about his brother, who is going to have to have surgery on his spine sometime in the near future.
This disease can be emotionally draining,on whoevers lives it touches, be it the patient, or their families. This site is a wonderful place...Everyone here is dealing with the same thing in one way or another. Please feel free to message me anytime, as I would love to be able to chat with you about our experiences, I wish I would have found this site sooner. I could have used it during the last round of surgeries :)

By live
Posted October 9, 2009 at 12:11 pm
Report post

You are something else. Forget the guilt it's really out of your hands. Don't bottle it up and do talk with your partner - I am sure that would make you feel a whole lot lighter. In my part of the world we do not have insurance, and 30% don't have jobs, many not even proper housing, but we do also get VHL. You have fantastic institutes in the USA like NIH that is doing great work on VHL, celebrate that fact. It's just amazing how you are handling and helping your spouse. Amazing. Don't think too far ahead Michelle, live day by day and try to enjoy your time with your loved ones.

By pupa
Posted October 10, 2009 at 1:44 pm
Report post

Dear Michele
The strength you have is what is keeping your hfamily together, F father A and M mother I I L love Y you.
F A M I L Y. My son has vhl and being a parent of a young man such as my son is diffficult and his sibliongs trying to treat all equally, but for what my son with the vhl is a specail human breing and he jhas been through the ringer. I wish you well and the vhl support group helps

Welcome to Inspire!

Explore topics in this discussion:

13 replies

Add to the discussion

Group leaders

You