Just whining...

[UkrainianTracksuit]

Just want to have a pity party over a first world problem. 



My SPK transplant was the best decision of my life and literally provides the most normalcy I’ve ever had in my life. And then, something happens, and I’m brought back to earth that I’m still a patient on a form of renal replacement therapy. Although I feel great and live “normal”, I’m not exactly normal, still.



My husband is from a really small town called Dukat. The closest (most basic) hospital is in the nearest “bigger” city of Omsukchan. A more advanced hospital is 370 miles away but they don’t have a nephrology department. Only urology to handle kidney stones and tumors. Time to be thankful I had availability for dialysis then.



His nuclear family still live there and he’s decided he’s going home for an extended trip. Not sure why, but he loves it there. I’ve never been. Although original intentions were that I would go with him, we decided that I’m not going. My doctors are not helping me accumulate the drugs I need (regulations) and they gave their opinion (it was advice, not orders), that it’s not a good idea to go to places without quick access to good medical care. My husband has this “need” to go home (what is he, a bird?) after seeing so many sick people this year. It bothered him a lot that a (prior) transplant patient (not kidney...) we met in hospital (had complications later on) passed away and he was barely 25. He said he gave too much time to hospitals this year (...although he went to the FIFA World Cup...) so now he needs time at his roots.


So, his sister got really on my case that I “lied.” Like a lot of people, they picture transplant patients are sickly, pale, don’t live all that long and take bottles upon bottles of poison pills. Pretty much, they say transplant life isn’t worth living. They don’t know much. It’s what they hear from myths and television. When I said I’m doing really well and feel great, yet can’t go with my husband, she believes I’m lying. There’s obviously something wrong! 

It’s caused a rift between my husband and I during this holiday season. I know he’s unhappy here because he has no friends and he’s really different than guys his age here. Me thinks he resents me for this.

I don’t want to return to dialysis ever again, though I know it’s going to happen one day, but at least with HD, there were no expectations of me. With transplant, people expect more, and when you can’t, you’re a disappointment. All those happy smiling people riding bikes and stuff on pamphlets, you know? All the success stories of recipients swimming across lakes, climbing mountains....



I guess this wouldn’t be a problem if he was from somewhere half-way civilized. So... just kinda weepy today... with reality hitting smack in the face that tx is a form of RRT. An awesome form of RRT but that’s what it is nonetheless. With so much goodness, we kinda forget that. Anyone know this feeling? 

[LorinnPKD]

Ugh!  Lots of people don't get that some disabilities are invisible!

When I went in for fistula surgery, the anesthesiologist peeked into my room, kept walking, and soon returned.  He verified my name and shook his head in mild confusion and said: "You don't look like a kidney patient!"  And I was baffled -- I mean, what is a kidney patient supposed to look like?

[UkrainianTracksuit]

Yes, exactly, what is a "kidney patient" supposed to look like or even, what is the baseline for all kidney patients? We're all different and it's frustrating to deal with a lot of preconceptions, from family, and even medical professionals, like that anesthesiologist.

[kristina]

Just want to have a pity party over a first world problem. 



My SPK transplant was the best decision of my life and literally provides the most normalcy I’ve ever had in my life. And then, something happens, and I’m brought back to earth that I’m still a patient on a form of renal replacement therapy. Although I feel great and live “normal”, I’m not exactly normal, still.



My husband is from a really small town called Dukat. The closest (most basic) hospital is in the nearest “bigger” city of Omsukchan. A more advanced hospital is 370 miles away but they don’t have a nephrology department. Only urology to handle kidney stones and tumors. Time to be thankful I had availability for dialysis then.



His nuclear family still live there and he’s decided he’s going home for an extended trip. Not sure why, but he loves it there. I’ve never been. Although original intentions were that I would go with him, we decided that I’m not going. My doctors are not helping me accumulate the drugs I need (regulations) and they gave their opinion (it was advice, not orders), that it’s not a good idea to go to places without quick access to good medical care. My husband has this “need” to go home (what is he, a bird?) after seeing so many sick people this year. It bothered him a lot that a (prior) transplant patient (not kidney...) we met in hospital (had complications later on) passed away and he was barely 25. He said he gave too much time to hospitals this year (...although he went to the FIFA World Cup...) so now he needs time at his roots.


So, his sister got really on my case that I “lied.” Like a lot of people, they picture transplant patients are sickly, pale, don’t live all that long and take bottles upon bottles of poison pills. Pretty much, they say transplant life isn’t worth living. They don’t know much. It’s what they hear from myths and television. When I said I’m doing really well and feel great, yet can’t go with my husband, she believes I’m lying. There’s obviously something wrong! 

It’s caused a rift between my husband and I during this holiday season. I know he’s unhappy here because he has no friends and he’s really different than guys his age here. Me thinks he resents me for this.

I don’t want to return to dialysis ever again, though I know it’s going to happen one day, but at least with HD, there were no expectations of me. With transplant, people expect more, and when you can’t, you’re a disappointment. All those happy smiling people riding bikes and stuff on pamphlets, you know? All the success stories of recipients swimming across lakes, climbing mountains....



I guess this wouldn’t be a problem if he was from somewhere half-way civilized. So... just kinda weepy today... with reality hitting smack in the face that tx is a form of RRT. An awesome form of RRT but that’s what it is nonetheless. With so much goodness, we kinda forget that. Anyone know this feeling? 

Dear Ukrainian Tracksuit,
I feel terribly sorry for your predicament, because, being dependable - in an emergency - on people, who don't want to know too much about your predicament, because - after all - a transplant is only a different treatment from dialysis, emphasis on different treatment.
I doubt whether you have a chance to be honest about how you are feeling health wise ? Their behaviour frightens me a bit,  because it practically forces you to put-on a bright and happy face at all times only to please them, even if you might feel like not moving at all and lie in bed until you get better and stronger again. I am very sorry to be so very honest, but it has always upset me to see or hear how a fragile, vulnerable person is being treated, as if they are perfectly healthy, only because their environment refuses to "see" that this vulnerable person needs all the understanding and help they can possibly get ...
I wish you all the best and if you need an honest word or a talk, I shall always be there ... 
Please take great care, Kristina.

[UkrainianTracksuit]

Thanks kristina! 

His family was absolutely super kind during transplant. They were really concerned, called a lot, managed to send cards and a gift later on. They are very caring people but like you say, they just don’t understand the situation. And they have hang ups over our family situation because they are traditional in their ways but in this case, they have learned they have no say in the matter. Since they are kind of simple people (and I mean it in the nicest way), their knowledge of transplant comes from investigative television shows, police crime dramas and some pretty questionable headlines. They don't know of the contributions and research of scientists done in the same country.

They really wanted a positive outcome but remain skeptical of someone having such a major operation/on such prescriptions living a normal life. In a way, yes, I would be hesitant to tell them if I have any such problems because I don’t want to deepen their false beliefs that transplant doesn’t improve quality of life. It's like of like being an ambassador within signing on to it!

I was honest in that the reason I’m skipping the visit is not due to how I feel but rather, they live in a place where medical care is lacking. They know that because his dad has a heart condition. (Old age, hard life, nothing congenital.) And secondly, if I don’t have adequate anti-rejection drugs, I’m not going anywhere. But they are adamant that something is wrong when nothing is wrong.

It bothers me a lot that I can’t go and in a way, I feel tethered in the way dialysis made me feel. And you’re right, it’s just a different form of treatment. I never viewed transplant as a cure, and was never advised of any such thing, but I got carried away with being “so normal” now. My husband should go visit them too so he can’t later say my “needs” and “time requirements” stifled his life. But goshdarnit, it’s not my fault they live in Fraggle Rock!

[MooseMom]

I guess it depends upon how much of an "ambassador" of transplant you want to be, along with how much his family really wants to know.

You've already explained your situation, so it is not your fault if they continue to believe something is "wrong".  People believe what they want to believe.  Who really cares if they remain "skeptical", anyway? 

Sweet Jesus, I hope that someday you will no longer let yourself be the target of your husband's resentments.  "Cultural quirks" may be an explanation for why he behaves as he does, but that's no excuse for letting him use you as some sort of scapegoat or excuse for why his life isn't just the way he wants it.  He's a pretty needy guy!  He's complaining despite the fact he got to go to the World Cup?  Dearie me!  LOL!

People who have transplants travel all over the world.  That's the point of it all.  If you really want to go, you can go.  I've been all over the place and have never needed expert renal care, but that's the risk we all take.  Even people who are healthy take a risk when they travel to remote places.  I imagine you can at least get a month's supply of meds, so go for, say, three weeks.  You'll have enough meds, right?  You haven't been forbidden to go, so if it is so dreadfully important for you to go, then just do it.  If you want to prove to them that nothing is wrong, then go.  If your husband wants to stay longer, then let him and return on your own. 

Good luck with whichever decision you make.  Don't be afraid to change your mind!  Take care of yourself!

[kristina]

Thanks kristina! 

His family was absolutely super kind during transplant. They were really concerned, called a lot, managed to send cards and a gift later on. They are very caring people but like you say, they just don’t understand the situation. And they have hang ups over our family situation because they are traditional in their ways but in this case, they have learned they have no say in the matter. Since they are kind of simple people (and I mean it in the nicest way), their knowledge of transplant comes from investigative television shows, police crime dramas and some pretty questionable headlines. They don't know of the contributions and research of scientists done in the same country.

They really wanted a positive outcome but remain skeptical of someone having such a major operation/on such prescriptions living a normal life. In a way, yes, I would be hesitant to tell them if I have any such problems because I don’t want to deepen their false beliefs that transplant doesn’t improve quality of life. It's like of like being an ambassador within signing on to it!

I was honest in that the reason I’m skipping the visit is not due to how I feel but rather, they live in a place where medical care is lacking. They know that because his dad has a heart condition. (Old age, hard life, nothing congenital.) And secondly, if I don’t have adequate anti-rejection drugs, I’m not going anywhere. But they are adamant that something is wrong when nothing is wrong.

It bothers me a lot that I can’t go and in a way, I feel tethered in the way dialysis made me feel. And you’re right, it’s just a different form of treatment. I never viewed transplant as a cure, and was never advised of any such thing, but I got carried away with being “so normal” now. My husband should go visit them too so he can’t later say my “needs” and “time requirements” stifled his life. But goshdarnit, it’s not my fault they live in Fraggle Rock!

Dear Ukrainian Tracksuit,
I am so glad that you understood my comment so well, because, to be quite honest, I was wondering and fearing, whether my comment was hopefully not "too" honest ?
After all : I don't know your husband and/or your or his family and might have misunderstood something somewhere ? It only came over a little bit harsh to me, how they seem to look at your situation after your transplant-operation and I sincerely hope - since you pointed out that they are being traditional - they are not hoping, that after the transplant-operation you might delight them by getting a little too early into the "family way" etc. ?
I do hope you recover well in your own time ... and I do wish you all the best for the future and good luck in 2019 ...  and please take great care of yourself at all times and please don't forget :  the first year is extremely difficult to get over with after a kidney-transplant and please look after yourself at all times and I send you good luck wishes and all the best from Kristina.

[UkrainianTracksuit]

Hey MooseMom, all good thoughts, thanks.
 

You’re right. It is technically possible to go away for 3 weeks instead of 3 to 4 months. It is attainable if planning is done properly. I thought of the whole block of time and let my mind get ahead of me. But you know, after watching some videos on YouTube of the area, I’m glad I’m not going at all. It was very depressing. 

The weepiness aligns more with the overall picture, I think. Recently, I'm finding out how limited I am in where I can work in regard to drug coverage. So, while transplant opens so many doors, many remain shut, and this trip was the cherry on top. Obviously, it’s a glass half empty mindset. Instead of tethered to a machine, I’m tethered to drug coverage! Small beans in the larger context of new freedom off the machine.

You’re absolutely correct that I can’t change his family’s skepticism. It’s like they want to believe things are fine but can’t get over that hurdle. You're right it’s not really my problem, but his sister’s tone was just so.... accusatory. It upset me me so I got more weepy! And it ruined our holidays about to start.

As for my husband’s resentments, hehehe, this one is mostly my fault. 

I didn’t tie him up and lock him in a shipping container so he had free will to say no. However, I sold life here as “better quality.” He may have two great business ventures running but he gave up a lot to come here, primarily friends. He has zero friends here, he’s lonely and needs male comradery. He can’t connect with people here since views are different and his life made him a different man. This wasn’t a problem before. His life became work, dialysis taxiing, nursing homes and hospitals! Now, it’s work, gym and his new hobby of long track speedskating.... of all things... but little social interactions. My senior citizen dad tries to fill the void but it's not the same.

He’s going ice fishing alone because of a lack of friends. I’m told it’s not safe to do that when unfamiliar with lakes. This used to be a “guy weekend” thing. So, I feel guilty. He learned not to regular fish with me because I kept saying, “oh, the fishie is cute! Put it back!” Long story short, I think he’s entitled to be resentful, but he’s gotta come to peace with it, not me. Either he gets over it, lives better or lives miserable. But I hear what you’re saying, oh poor boy, you went to the World Cup? We feel so sorry for you! 

Kristina, 


Please be assured that I didn’t take your message in the wrong way. The words of your messages are visibly well-thought out, careful and well meaning. 

No, they aren’t expecting me to get in the family way but rather, they hope I stay alive. That’s a low threshold!  They don’t want me to be living sickly but telling the world I’m not sick. When reality is, I feel just fine.  They just expect that I feel sick.

Best wishes in 2019 to you as well and may you continue to heal! 

[MooseMom]

UT, I understand your husband's position because I myself have given up an awful lot on two different occasions to be with my husband.

There are times when I have felt resentment because my life seemed to change so much where his did not.  I have had to fight that "different culture" battle.  I can attest to the fact that it is just way too easy to fall into the "My sad life is YOUR fault" mindset.

When that happens to me (mostly when I am overly tired or sad or scared about something else entirely), I know I am being terribly unfair.  If I want to change my life and surround myself with friends, then I will make that choice to do so.  My happiness with my life is not my husband's responsibility.  It is up to all of us to take the life we are given, formed in part by the choices of our own making.

I don't know if anyone is "entitled" to be resentful, but if that is how your husband chooses to approach life, I hope he finds a way to keep his resentment to himself.  On the other hand, part of taking care of yourself is seeing that you have no reason to bear any guilt.  Self imposed guilt can be a vicious and malignant force.  Your husband is an adult man who has made his own choices, and you bear no guilt for those choices he has made.  I hope you can become more merciful to yourself.

In the meantime, keep trying to find a way to work with your insurance or whomever to see if you can ever get an extra month's worth of meds.  May I ask what exactly is the problem?  What reasons have been given to you explaining exactly why you can't have at least a 2 months supply?  I have been told that if I want to take a longer trip and need more meds, it's my insurance company that I'd have to approach and ask for an extra supply on a one time basis.

I can understand why you wouldn't want to travel to such a depressing place; that's the last thing you need!!

You're right in that we are still tied down by certain things like meds coverage, etc.  There is no escaping the ties that bind us.  We all of us live with restrictions, and I mean ALL of us, renal patients or not.

Listen, I want to apologize if I've come off as too harsh.  I am just really annoyed with your husband and with the way he makes you feel guilty for things that are beyond your control.  You have been through a lot and have been so very lucky to now have a second chance to have a "normal" life, and I don't want him to intrude upon your happiness.  I am the first to understand that I know nothing about your husband nor about your relationship to him, but I trust you to make the right decisions that will give you the most happiness in your life.    It is not my place to be judgmental, but I will be just that because this is a message board where we are all encouraged to discuss these things.  You are absolutely free to ignore any and everything I ever post!  LOL!

Take care of yourself, and thank you for not lashing out at me despite my frustration on your behalf.  I will try to be more measured in my own frustration toward your hubby!   

[UkrainianTracksuit]

MooseMom,



You have a track record of providing thoughtful and balanced thoughts/advice on this site for a long time. Although we are “strangers”, I respect what you have to say and consider it wisely. No apologies are needed and you have the right to be judgmental, as that does not necessarily have to have a negative connotation. It is appreciated. 

For the drug coverage, it simply comes down to the doctors being hesitant to writing out a “one time” big supply for travel purposes. This prescription would overwrite the regular standing one with refills and then I’d need another for normal use. So, I usually get a 2 month supply no problem, so adequate to go away for 2 to 3 weeks, but not for 3 to 4 months. The insurance company likes to drag their feet on doling out large supplies of the more expensive drugs but I would fall under the 100-day travel supply... if I could get the prescription. The catch is that you can only use your 100-day supply once a year and would you put all your eggs in one basket in a depressing place? There are other places to see, to enjoy, as a transplant patient. (Anywhere but the U.S. since he keeps getting denied a visa!  )

My other concern is that studies show it’s one of the regions with high parasitic food and waterborne diseases, including drinking water. Inadequate medical care is a concern for this reason. Maybe if my husband nags enough they’ll move out and to the regional capital.

It’s not heaven on earth but it just makes me sad it’s another one of those things my husband and I can’t share. It’s another example of barriers but the more I think about it, someone would have to be pretty nuts to want to go there. And like I said previously, it just builds upon the barriers of work too. It’s time to reassess my goals as a transplant recipient, in all honesty, and see where life takes me. As you say, we all have barriers.

For what it’s worth, I might get “Self imposed guilt can be a vicious and malignant force” tattooed across my chest as a reminder when I start to fall into that hole. You’re right that he’s a grown adult man and has to be accountable for his choices, good and bad. Obviously, I was a bad choice as it opened up a Pandora’s Box of other bad choices, but HE made them.

My husband is a good guy at his core and I wouldn’t have entertained anything with him unless I respected him. But he’s really um, emotionally unintelligent, when it comes to sickness. He has empathy but doesn’t understand what it’s like to have medical hindrances at all. You’re either capable or not with no middle ground. Survival of the fittest! He was in a hard unit in the military, did sports and he’s in superb health. When he can’t solve a problem, he gets upset and frustrated. He can’t solve my physical state and it bothered him that so many of my “dialysis pals” died this year, as well as that boy. As he says, “normal people” are insulated from all this, but because of me, he had to deal with it.

He’s a grown man but it’s like a having little boy on the first day of school... pushing him out to make friends. If he could at least make progress with that, he probably wouldn’t blame me so much for being here. He knows we’re here forever too for transplant care and I am always going to make decisions with health as priority.

[MooseMom]

Thanks, UT, for the thoughtful post and the well thought out explanations!  I agree with you 100%, for what it's worth, that it may be much more fun to save your special meds request for travel to a place that you can both enjoy!  Gosh, even if I was not a transplant patient, I'd think twice about going to such a dismal destination.

A lot of men get frustrated when they can't fix something.  But you are not broken!

I may sound a bit Pollyanna-ish, but reassessing your goals is never a bad thing.  Life will always throw things at us, and "reassessing" is a way to bend but not break.  Even good things that happen can make you reassess; getting married, having a child, getting off dialysis...these are all "good" things, life changing events, but they DO make you reassess, nonetheless.

Thanks again for your post.  It is always a pleasure reading them.